Journal of Forbidden Research

Layoffs and sickness in Corvallis points the way for US

2010-09-07T10:38:00.001-07:00

Wrecking America's Economic Miracle

The week's New York Times features a paper on an out-of-work software expert from Corvallis, Oregon. She lost her job when her employer shut down its US operations and hired programmers in China because the cost of doing business in this state was much higher. Corvallis was once a high tech enclave, with employers like Hewlett-Packard boosting the local economy, and employing thousands of engineers. HP has almost shuttered its plant, and rumors exist that they may demolish the buildings that made up the campus to reduce their property tax payments.

When we published our 2007 study on Blastocystis in Corvallis, the potential of this disease to wreck local economies became apparent. Every family we talked to had members spending thousands of dollars, sometimes tens of thousands seeing specialists. And every family had at least one child who had developed learning disabilities. The economic effect of Blastocystis probably isn't felt too strongly in the states that host the NIH, where the prevalence of the infection is less than 7%. But in states like California, Oregon, Washington, Arizona, Florida, New York, Illinois, and Ohio, the infection rates have reached the 10-20% range. Blastocystis packs a one-two punch. People who are infected require high cost medical services, and the infection lowers productivity. So companies who site businesses in areas where the infection is endemic will find their workers to be less productive, and more expensive to employ.

Do The Math

It isn't too hard to see how Blastocystis infection can wreck an economy. The average wage in Oregon is $29, 340 (2003). The average cost of providing medical insurance for a family is now almost $12,000. It isn't hard to see how medical costs have a huge impact on profitability. Large studies have shown that the disease that Blastocystis causes will result in a substantial increase in medical expenses, as much as a 50% increase. Additionally, Blastocystis infection often hits workers who are relatively young (< 50 years old) who otherwise would not be seeking medical care.

The first time we did the math was in 2006, and one reader commented that we must have overestimated Oregon's infection rate, at 10%. However, about a year later, the State Epidemiologist's office testified that roughly 10% of the people in Oregon were infected with the disease. That number matches the value of 12% BRF obtained from Oregon State's Public Health Laboratory, and published in the peer-reviewed journal BMC Parasites and Vectors in 2007 (see appendices). With a 12% infection rate, this means that about half of the families in the state will have at least one member who is infected.

Wrecking the Economy

We've heard about the economic problems SARS, H1N1 flu, and AIDS have caused. Blastocystis may have them all beat, largely due to the actions of the federal government. Unlike the H1N1 flu, Blastocystis infection stays with most patients for a lifetime, unless it is treated. Unlike AIDS, it can be contracted from contact with contaminated food or water. A single food worker can infect hundreds of people in a year, and can infect entire families at a time. Finally, the NIH has "embargoed" all research on the organism, refusing to fund any US study since 1995 due to the controversy that previous NIH research produced in the early 1990's. While AIDS patients can be prescribed drugs that allows them to return to work and lead more or less normal lives, federal policies appear to be doing anything they can to drive Blastocystis patients to bankruptcy and suicide.

The economic effects aren't hard to predict. Families with members who were infected were struggling. In many cases, the members were children. Every family we talked to for our 2007 study had at least one family member with learning disabilities who was infected. Diseases like Blastocystis have been shown to produce significant cognitive impairment, corresponding to a loss of 4 IQ points. Blastocystis delivers a one-two-three punch. It lowers the productivity of the workforce today and increases their cost, which impoverishes families overtime. Next, it makes it impossible for the next generation to learn the skills they will need to compete in a global marketplace. Finally, as children are infected in their developing years, it destroys economic opportunity for the next generation.

In our 2006 book, we described the cases of patients in their 20's who lost their jobs, or had to drop out of college due to the severe long-term fatigue and diarrhea produced by Blastocystis infection. These kind of effects may be why almost every developing country in the Middle East, Asia, and increasingly Central and South America has identified Blastocystis as a problem.

It's especially important to maintain the health of US workers in today's global economy. If US companies don't want to pay the extra money to employ US workers who are infected, they can simply move to China: the infection rate in Beijing is 2%, which is 1/10th the infection rate of 20% measured in California a few years ago.

Transforming the Face of America

Blastocystis was rare in the United States, until the mid-1990's, when the prevalence of the infection skyrocketed from less than 2.5% to over 20%. The exact reason is not clear, but the time period corresponded with a substantial increase in illegal immigration from Mexico (see related blog entry, "Importing Poverty").

But what will the US look like as the infection spreads in states like Oregon, California, Arizona, Florida, New York, and Ohio? While Asia has addressed the problem head on with research labs, many studies, and physician education, the administration in Washington has done everything possible to hide the problem. We may start to look a great deal like the countries where the infection is now endemic, like Mexico and Venezuela.

What are some things to look for? Corvallis has been hit by layoff-after-layoff. Most of the technical employers, like Hewlett-Packard, International Game Technology, and many others have shut down all or more of their operations here. The only sector expanding is the medical sector, as Good Samaritan builds more facilities to take care of the population. In the short term, medical professionals will benefit from the windfall of a large number of patients who need endoscopies, colonoscopies, and long term gastroenterological and psychiatric care. Many patients spend their life savings on medical tests and treatments trying to find out what is happening, and to get cured. However, because the money spent doesn't actually cure the disease or stop its spread, once the money is transferred, we will be left with a population that is sick and destitute.

So this clearly isn't a good deal for doctors either. Today, the hospital complex in Corvallis sits on a hill overlooking the city - a city which is going bankrupt because it can't collect enough property tax.

References:

Neznanski, Matt. Mayor, worried that demolition is end game, pushes enterprise zone. Corvallis Gazette-Times, February 28, 2010.

Hall, Bennett. How Safe is Your Job? Corvallis Gazette-Times, July 3, 2010: Story about loss of high-tech industry in Corvallis

Neznanski, Matt. HP Makes Another Round of Layoffs. Corvallis Gazette-Times, February 27, 2009.

Neznanski, Matt. Corvallis HP Layoffs Start. Corvallis Gazette-Times, August 20, 2008.

Rampell, Catherine. Once a Dynamo, the Tech Sector Is Slow to Hire. New York Times, September 6, 2010.

Niccolai, James. HP's Singapore lab to develop cloud services platform. Computerworld, February 24, 2010.

Hall, Bennett. Big Construction Projects to Start on Samaritan Campus. Corvallis Gazette-Times, October 16, 2007.

Boorom KF, Smith H, Nimri L, Viscogliosi E, Spanakos G, Parkar U, Li LH, Zhou XN, Ok UZ, Leelayoova S, Jones MS. Oh my aching gut: irritable bowel syndrome, Blastocystis, and asymptomatic infection. Parasit Vectors. 2008 Oct 21;1(1):40.PMID: 1893787

Ali SA, Hill DR. Giardia intestinalis.Curr Opin Infect Dis. 2003 Oct;16(5):453-60. Review.PMID: 14501998

Li LH, Zhang XP, Lv S, Zhang L, Yoshikawa H, Wu Z, Steinmann P, Utzinger J, Tong XM, Chen SH, Zhou XN Cross-sectional surveys and subtype classification of human Blastocystis isolates from four epidemiological settings in China. Parasitol Res. 2007 Dec;102(1):83-90. Epub 2007 Oct 2.PMID: 17912552

What comes around goes around: US medical 'experts' ignore Blastocystis, and now must deal with a growing pseudo-science movement

2010-08-25T16:18:00.000-07:00

In the mid-1990's, US medical experts made a far-reaching decision. A number of physicians and scientists had identified Blastocystis, a single-celled gastrointestinal parasite, as the cause of disease in patients. But some other physicians contested this claim. There were a few things they could have done. They could have arranged for a neutral third-party to obtain some samples of the organism, infect animals, and see what happened. They could have funded a small effort to perform an investigation and try to determine why there was a difference of opinion. But there was a third choice - shut down all research in the US, and teach medical students to avoid Blastocystis at all costs.

It turns out that we took the third option. Officials at the CDC wholly embraced this path, and until 2006, the only studies they would quote on their official information page were from the small number of US physicians who had identified Blastocystis as harmless. In the intervening years from 1995 to 2010, a lot happened. Overseas, researchers started looking more closely at Blastocystis, and found that is wasn't much different from the other organisms which cause disease in humans, like Giardia and E. histolytica. They showed it caused illness in animals, sometimes very severe illness. They worked to develop treatments. They approached the infection as previous infections had been approached.

It's not clear why, but in the United States, the most reasonable course of action to our medical experts appeared to be to do nothing. In fact, doing absolutely nothing about an infectious disease appears to be a respected trait in US medicine, much in the way citizens of the UK are advised to keep a "stiff upper lip" in the face of adversity. Indeed, articles by US medical experts on many diseases often begin by describing how mild and inconsequential the malady is, and how they are just looking at it because patients are so bothersome about vomiting blood or having to use the toilet 50 times a day.

But this decision is coming back to haunt the hallowed halls inhabited by our residential experts. Between 1995 and 2000, the rate of Blastocystis infection on the wet coast increased from about 2.5% to over 20%. And as those people got sick, they were unable to find any assistance from conventional medical case. So they began flocking to alternative medicine.

Every week, I answer questions from patients who want to use a variety of bizarre treatments to address Blastocystis infection. These inquiries come only from patients in the United States and the UK. In other countries, they have come to terms with the existence of microbial infections which cause chronic illness. They have full time parasitologists in mode medical schools, and these people are able to explain diseases like Blastocystis, even if they can not cure all the cases. The United States and the UK are the only countries in the world to wholly shut down the scientific study of this class of infection.

The lack of scientific information on Blastocystis is a tremendous boon to the field of alternative medicine, which includes anything from herbalism, which might actually work sometimes, to blatant quakery. And these people aren't just graduates of 2-year alternative therapy programs. Many fully accredited medical doctors are using treatments that the parasitologists I work with would consider nuttier than a fruitcake. Here's how one patients described how a medical doctor (yes, MD) in Oregon diagnosed food allergies:

"He put his hand on my shoulder, and I would hold different foods in my hand.
If my arm fell down, that meant I was allergic to the food. If it rose, then
I was not allergic."

The Web Of Science

When I was getting my undergraduate degree at Stanford, I took a class called "Philosphy 51: Introduction to Logic." It was unusual, at least in 1987, in that it was almost entirely computer based. You started out from a set of logical axioms, and constructed proofs that became progressively more complex. For example, given that A implies B, and B implies C, you could prove that A implices C, and that NOT C implies NOT A. One lesson was particularly interesting. In that lesson, the system allowed you to assert that something that was false was in fact true. Once this was done, everything about logic unraveled, and it became possible to prove anything was true.

What's happened in US medicine with Blastocystis is similar. The premise is that Blastocystis should be ignored, that it doesn't cause chronic illness, despite what over 100 full-time scientists at most of the world's leading medical research institutions have written. When people get sick, their illness can't be explained by the mainstream family practitioner, so they go outside of the system.

The money they spend is changing US medicine forever, these new consumers are ripping apart the medical system that was created by the same US "experts" who shut down Blastocystis research.

For example, a 1991 NIH study had already noted that metronidazole was failing to cure many infections, and a new drug would be needed. Several drug possibilities were mentioned. But after the 1995 shutdown, the NIH refused to investigate any of them. Even in 2006, despite letters from Congress, they still refuse to work to identify any drug to treat patients.

So what do patients hear when they go to the doctor? Heavy metals are causing their Blastocystis infection to be difficult to treat. The metals are from dental fillings and vaccines. They should avoid vaccination and go on chelation therapy to rid their body of toxins.

This isn't just happening for Blastocysits. I wrote a very conventional article for athe newsleter of a charity called the "Gut Trust" in the UK in 2007 about Blastocystis infection underlying many cases of what Western doctors are calling IBS. Dr. Nick Read, a leading advisor to the charity, and a major figure in gastrointestinal research corrected me, indicating that microbes do not cause disease by themselves. As proof of this, he noted that many people carry TB without showing symptoms. Also, we are mistaken in the current medical belief that H pylori causes stomach ulcers, even though the Nobel Committee awarded a prize to the pair that made this discovery in the 1980's. That is because some people have H pylori but do not have symptoms.

This is true of most infectious disease, and mainstream infectious disease researchers now link variability in symptomatic presentation to host genetic factors. They can now reproduce the genetic factors in mice and create animals which will get sick or not get sick. Think of Typhoid Mary - she carried typhoid fever her whole life, had no symptoms, but infected many other people. But this kind of stuff is "conventional science" It is reductive. It does not allow for personal creativity.

So what does cause illness? According to Dr. Read, "stress and toxins."

Return to the Middle Ages

What we're seeing in the US and UK is the jettison of mainstream science, in favor of what advocates claim is a "wholistic earth-centered view of medicine" that doesn't rely on harsh antibiotics, vaccines, and treatments.

So the curmudgeons who shut down Blastocystis research now have about ten different things to content with. They have mainstream doctors advising patients not to vaccinate themselves. They have professionals arguing that vaccines and antibioitics are unnecessary and harmful. And they have a half dozen new "alternative" treatments in their place.

Judging from their writings, these alternative treatments are causing much more heartburn than would have ever been caused by just doing the science of Blastocystis. Let this be a lesson for future generations. If being conservative means being responsible, that that means taking appropriate action.

So are these things silly? Yes. As Blastocystis spreads, we'll see patients spending more on these things, and we'll see less interest in funding conventional medicine.
US spending on alternative medicine, at around $18 billion/year, already exceeds the budget of the NIH.

Here's a list of what Blastocystis patients are ploughing their family's savings into:

Chelation - This treatment involves consuming specific drugs, like EDTA, to "rid the body of heavy metal toxins" which accumulate from dental fillings, pollution, and vaccines. NUTTY FACTOR: I've worked with parasitologists in 7 countries for over 5 years, and not one has ever mentioned chelation as a direction for treating enteric parasitic infections. There may be some value in treating malaria, but the chelation in this case gets rid of the body's iron, and has nothing to do with heavy metals.

Sputnik - This is a $300 pill which the patient swallows, and it supposedly emits an electromagnetic pulse which cures the patients of any bacterial or parasitic infection.

Rife Machine - This is a $80 machine the patient buys, and it emits electromagnetic waves at a specific frequency, which kills certain parasites, viruses, and bacteria, depending on the frequency of course. Patients have written me asking for the frequency for Blastocystis.

Colloidal Silver - This is a concoction made by dissolving silver in water. Patients drink it to address infections. There is actually some evidence that silver has antimicrobial properties, but it also accumulates in human tissues, and at therapeutic levels may turn skin blue permanently. Again, after years of working with parasitologists around the world, I have never heard anyone talk about colloidal silver.

Hyperbaric Oxygen - This involves going into a chamber, having it pressurized, and letting the oxygen treat the disease. This actually may work, but it is very expensive (cost per treatment > $1000) and it doesn't cure the disease, so patients have to come back over and over. Again, it might be better just to identify a reliable treatment, and treat the patient once, as we do with other infectious diseases.

Immunology 101: Why some diseases never go away

2010-08-22T18:34:00.000-07:00

Many Blastocystis patients write BRF with accounts of long-term infections, some lasting as long as 20 years. When some Western physicians hear this, they say, "That's impossible unless the person has AIDS or cancer." After all, in high school, we all learned about the immune system, and how it acts like a little army to attack invading pathogens. So if somebody isn't getting better, they must have some kind of problem, right?

Wrong - it turns out everything they taught you about the immune system in high school was wrong, or at least a huge oversimplification. Defending your body against incoming threats is a complex task. The most basic problem is, "How do you recognize an invading organism?"

That sounds like an easy problem, and maybe it is if you're a human being and you can find it under a microscope, and then "google" it. But our immune systems were developed long before google. In fact, the human immunological system isn't too different from that of many other bird and mammalian species. Many of the things that go on in our immune system were developed millions of years ago.

To complicate things, the immune system must not only recognize invading organisms, but also avoid recognizing innocuous things. For example, if you developed an immune reaction to chicken, beef, and vegetables, you would die. So how does your body know the difference between a carrot and the anthrax bacteria? There are, in fact, a half dozen little tricks that immune cells use to identify potential pathogens. Many pathogens have certain chemicals in their cell membranes that are not found in human or other mammals. Others have patterns in their DNA which the human body can trigger off of.

But it gets more complex than that, because sometimes those patterns show up in innocuous things, like pollen. This is one reason people get allergies - their body keeps putting up an immune reaction to an antigen, thinking it is a pathogen, when it's just a little bit of pollen. Plus if the body over-reacts to an antigen, it could wind up killing the big, and also killing the host. And finally, the body has the ability to identify new compounds as targets of the immune system, which is how vaccines work. But it also has to make sure not to identify a compound that is present in the human body naturally, or the host will develop an auto-immune disease.

In order to accomplish all of this, your body has developed a large number of chemicals which cells use to signal eachother. These chemicals turn on immune functions, and can also turn them off. Many of them do both - they turn on one function, and turn off another, which acts as a kind of stop-gap against your body ever going too crazy to the point of killing itself.

Infectious diseases, and many parasites, take advantage of this signaling system. The ones that are successful have learned to manufacture chemicals that activate or shut down specific processes in the host. The organisms may not have learned this in humans - for example, malaria infects cattle, and cattle use the same immunological markers that humans use, so what malaria can use in a cow will also work in humans.

This is why some people will develop infections that never go away. It's also why many of the most prevalent protozoa also cause symptoms. In the world of germs, good guys really do finish last. To win this game, a bug has to know how to generate a lot of chemicals, and some of those cause side effects. Here are a few examples:

In 2006, scientists found out that Leishmania is able to shut down one of the processes that the body uses to recognize and defend against new antigens. Leishmania is a nasty parasitic disease transmitted by sandflies - in many patients symptoms resolve spontaneously, but other patients develop long-term illness, which can be severe. Researchers found that Leishmania is able to shut down antigen responsive CD4 T-cells.

But another kind of CD4 cells can cause reactivation of Leishmania in patients who have developed chronic illness. A type of CD4 cell called a CD4+CD25+ cell can actually act to reduce some of your immune functions. When these cells become too numerous, Leishmania infection is re-activated. In some individuals, malaria is a temporary infection, but in others it turns into a chronic illness. The same mechanism is responsible for a process that turns malaria into a chronic illness.

Cellular interactions don't always work against the host. In the parasitic infection toxoplasmosis, a compound present on the invader stimulates host cells to produce a compound called interleukin-12 (IL-12), which acts as a signal for other cells to begin producing interferon-gamma (IFN-gamma). IFN-gamma is kind of like an espresso for your white blood cells - it send them into overdrive, and they begin finding and killing things more actively.

References:

Ramer AE, Vanloubbeeck YF, Jones DE. Antigen-responsive CD4+ T cells from C3H mice chronically infected with Leishmania amazonensis are impaired in the transition to an effector phenotype. Infect Immun. 2006 Mar;74(3):1547-54.PMID: 16495525

Mendez S, Reckling SK, Piccirillo CA, Sacks D, Belkaid Y. Role for CD4(+) CD25(+) regulatory T cells in reactivation of persistent leishmaniasis and control of concomitant immunity. J Exp Med. 2004 Jul 19;200(2):201-10.PMID: 15263027

Gazzinelli RT, Wysocka M, Hayashi S, Denkers EY, Hieny S, Caspar P, Trinchieri G, Sher A.
Parasite-induced IL-12 stimulates early IFN-gamma synthesis and resistance during acute infection with Toxoplasma gondii. J Immunol. 1994 Sep 15;153(6):2533-43.PMID: 7915739

Hisaeda H, Maekawa Y, Iwakawa D, Okada H, Himeno K, Kishihara K, Tsukumo S, Yasutomo K. Escape of malaria parasites from host immunity requires CD4+ CD25+ regulatory T cells. Nat Med. 2004 Jan;10(1):29-30. Epub 2003 Dec 21.PMID: 14702631

Why do Blastocystis patients kill themselves?

2010-08-17T19:18:00.000-07:00

Last year, someone relayed an account to me about several Blastocystis patients who had committed suicide after a lengthy illness, and multiple attempts to treat it. Many patients find the severe fatigue, diarrhea, pain, and other symptoms too much to deal with.

If you're a US physician reading this, I'm sure you're thinking that Blastocystis infection can't get that severe, and the patients must had some other disease. That's what has been taught in some US medical schools. But that information doesn't match what's reported in peer reviewed medical literature. In fact, most of what is taught in the US appears to be based on 3 or 4 studies performed in the US in the 1980's and early 1990's by health care workers with no background in infectious diseases or parasitology. In the mid-1990's, the field started attracting higher quality researchers, the observational and anecdotal studies disappeared, and have been replaced by studies which resemble those performed to assess the impact of other infectious diseases.

But US medical schools don't want to hear that, so we're stuck with a 1993 view of the world, which means many doctors have no idea of what they are dealing with, and even if they do, they are getting little support in how to manage the infection clinically. These people had seen some of the best gastrointestinal specialists in the world -- Blastocystis infection was their only problem.

In the US, most of the country's medical research spending goes into research for AIDS and cancer. People with these diseases want to live. In fact, when cancer patients "beat cancer", they now go onto write books, appear on talk shows, producing standing ovations in the crowd when they recount their personal struggle. According to doctors, Blastocystis patients just have a little diarrhea. And many of them don't even have that. So why are they killing themselves?

Theory #1: Nobody wants to have permanent diarrhea Many Blastocystis patients wind up with severe diarrhea - as frequently as 20 times per day. In this state, it is difficult to hold down a job, or do anything productive. Others also have severe fatigue on top of that. So even if the diarrhea is controllable, the fatigue can make it difficult to participate in any meaningful human activity.

Based on the most recent studies from multiple sites, most people with what Western doctors called "irritable bowel syndrome" (IBS) are infected with Blastocystis. And researchers have been following the suicidal habits of IBS patients for some time. IBS patients report a lowering in their quality of life that is similar to that reported by patients with congestive heart failure. And they contemplate suicide, and engage in suicidal acts three times more often than their healthy counterparts. So one possibility is simply that Blastocystis infection lowers the quality of life of patients to the point that they do not want to keep on living.

Theory #2: Societal attitudes toward illness. Scientists studying Blastocystis infection have trouble understanding why the medical community is making such a big deal about treating it. From the viewpoint of a lab, the organism is no different from a half-dozen other intestinal protozoa that we treat all the time, like Giardia, E. hisolytica, and D. fragilis. The major difference appears to be that Blastocystis is more difficult to treat, so doctors would have to use different drugs, or prescribe them for a longer period of time.

Faced with this situation, many doctors in the 1990's simply stated that Blastocystis patients have irritable bowel syndrome (IBS). IBS represents the only case where an infectious disease was first treated by doctors, and then redefined as a "syndrome." As Blastocystis spread, and more patients developed IBS, researchers sought an explanation for why so many individuals would show up at the doctor's office with a syndrome.

Their answer is called "learned illness behavior." The current theory, fully supported by research grants from the NIH, states that people who have Blastocystis infection are not really sick. Rather, they are perfectly healthy, and they choose to have diarrhea, severe fatigue, and other symptoms because (and I am not making this up) they like going to the doctor.

It isn't unusual for society to attack individuals with an infectious disease. In the Middle Ages, infectious diseases were considered a judgment from God. If you got sick with a disease, it was a punishment for wrongdoing. Other primitive societies considered sick people to be bad omens. One would have hoped that with the development of the microbial theory of disease, these attitudes would have faded, but they haven't. In fact, the NIH has done more to stigmatize patients with Blastocystis infection than any other organization in the world.

According to microbial research, if an individual in a family develops diarrhea and other symptoms, others may develop the same symptom due to "contagion." The new NIH indicates that microbes don't really cause these symptoms, but they are rather the personal choice of the sick individual, who choose to be sick because they get benefits from this. If you watch Oprah, you will see how similar this is to New Age thought, in the form of the book called the "Secret", which teaches that people who do positive things live positive lives, while negative things happen due to people's negative attitudes. So how does the NIH explain contagion in a family? Their research called this "Learned Illness Behavior." That is, children develop diarrhea and other symptoms after their parents, because they see their parents being sick, and decide this is such a great thing, they should be sick too (really, I'm not making this up).

As such, you see that cancer patients have a different reception from Blastocystis patients, and this may explain the difference in suicide rates. Cancer patients get support from the community, their families, and physicians. Blastocystis patients are told they are making up the symptoms to avoid work or get some kind of benefit. That is, they are weak, despicable people, and their disease is their own fault. So many of them kill themselves.

Theory #3: Organic Causes. Blastocystis and other gastrointestinal protozoal infections are different from viral and bacterial infections, in that they don't usually cause symptoms by "attacking" the host. Chronic illness is produced when these organisms turn off specific host immune responses. One of the side effects of turning off certain immune responses is that others kick in, and some of these can cause substantial organic changes to a patient's physiology. And these changes can produce neurological and psychiatric symptoms. As such, a third reason that Blastocystis patients kill themselves may be because they develop psychiatric disease as a result of their infection.

Because Blastocystis infection rates have increases in some states substantially over the last 15 years, we can look to see if suicide rates have risen along with that. In Oregon, this has certainly been the case. In the early 1990's, the Blastocystis infection rate measured in West Coast labs was less than 2.5%. It rose to over 20% by 2000, and now is in the 10-20% range, as measured from Oregon's Public Health Laboratory. Oregon's suicide rate kept pace with this change, and is now among the highest in the nation.

So why do Blastocystis patients kill themselves? There may be several reasons, or a combination of reasons. Societies can be judged by how they treat their most vulnerable citizens, and what the medical community in the US is doing to Blastocystis patients today is unforgivable.

References:

Levy RL, Whitehead WE, Von Korff MR, Feld AD. Intergenerational transmission of gastrointestinal illness behavior. Am J Gastroenterol. 2000 Feb;95(2):451-6.PMID: 10685749 [

Miller V, Hopkins L, Whorwell PJ. Suicidal ideation in patients with irritable bowel syndrome. Clin Gastroenterol Hepatol. 2004 Dec;2(12):1064-8.PMID: 15625650

Spiegel B, Schoenfeld P, Naliboff B. Systematic review: the prevalence of suicidal behaviour in patients with chronic abdominal pain and irritable bowel syndrome. Aliment Pharmacol Ther. 2007 Jul 15;26(2):183-93. Review.PMID: 17593064

Yakoob J, Jafri W, Beg MA, Abbas Z, Naz S, Islam M, Khan R. Blastocystis hominis and Dientamoeba fragilis in patients fulfilling irritable bowel syndrome criteria. Parasitol Res. 2010 Aug;107(3):679-84. Epub 2010 Jun 8.PMID: 20532564

Yakoob J, Jafri W, Beg MA, Abbas Z, Naz S, Islam M, Khan R. Irritable bowel syndrome: is it associated with genotypes of Blastocystis hominis. Parasitol Res. 2010 Apr;106(5):1033-8. Epub 2010 Feb 23.PMID: 20177906

Dogruman-Al F, Kustimur S, Yoshikawa H, Tuncer C, Simsek Z, Tanyuksel M, Araz E, Boorom K Blastocystis subtypes in irritable bowel syndrome and inflammatory bowel disease in Ankara, Turkey. Mem Inst Oswaldo Cruz. 2009 Aug;104(5):724-7.PMID: 19820833

Boorom KF, Smith H, Nimri L, Viscogliosi E, Spanakos G, Parkar U, Li LH, Zhou XN, Ok UZ, Leelayoova S, Jones MS. Oh my aching gut: irritable bowel syndrome, Blastocystis, and asymptomatic infection. Parasit Vectors. 2008 Oct 21;1(1):40.PMID: 18937874

Hussain R, Jaferi W, Zuberi S, Baqai R, Abrar N, Ahmed A, Zaman V. Significantly increased IgG2 subclass antibody levels to Blastocystis hominis in patients with irritable bowel syndrome. Am J Trop Med Hyg. 1997 Mar;56(3):301-6.PMID: 9129532

America turns to potions and spells to cure its ills

2010-08-17T11:41:00.000-07:00

As we enter the fall season, I can't help but think about Halloween, and all the trick-or-treaters who will be dressed up like Harry Potter and his colleagues. The idea of magic has a lasting hold on American society, and apparently many others. Indeed, for much of history, medicine has incorporated an element of magic. Native Americans used shaman, for example, to cure their diseases.

While I'll get some flack for cultural insensitivity, this approach didn't work very well, especially when smallpox got imported into the US. While Native Americans were dying of this disease, seeking spiritual redemption, Europeans were pursuing a different approach - science. They were developing vaccines. At first you might say that the comparison is unfair, because Europeans had microscopes and things, but this didn't really help the development of vaccines for smallpox, because it's a virus, and too small to see. In fact, the process of vaccinating people for smallpox may go back even farther than the 1800's. Some papers suggest people were making crude vaccines from the scabs of infected patients centuries earlier.

The things that differentiates science from magic is the controlled study. When I bring this up to New Agers, I hear moans and complaints, but let's not forget that science was the first form of consumer protection against medical quackery instituted in modern society. You don't need high-tech to do science. For example, doctors believed that bleeding people was a good idea for centuries, and they performed this process (and charged patients for it), without ever verifying that it would work. With animals getting sick on farms all the time, it would have been a simple matter to "bleed" half the animals, and leave the other half be, and see if it really cured disease.

Magic isn't about controlled trials - it's about believing. And this, unfortunately, has captured the imagination of the American populace in the last 10 years, to the point that new infectious diseases like Blastocystis are being addressed almost entirely with unproven treatments - the equivalent of spells and potions.

The fault isn't entirely with the patients, since the scientific establishment has also broken its own rules, or more accurately, let loud-mouthed physicians run rampant. Science has two aspects - first, you discount things that are disproven by experiment. Second, you advocate things that can be proven by experiments. In the case of Blastocystis, scientists - real scientists who work at the NIH - had done careful experiments that showed Blastocystis was causing disease by the early 1990's. But these experiments conflicted with a small number of "observational studies" written by doctors at a health maintenance organization in California. Rather than defending the scientists at the NIH, NIH management chose to shut down all US research in the 1990's, and to begin telling scientists not to apply for grants to study the disease. In the 1990's, the prevalence of Blastocystis in many states in the US took off, rising from 2.5% in the 1980's to over 22% by 2000.

The NIH's refusal to participate in any kind of research may be forgivable, if it weren't for the dozen countries outside the US that now have research groups publishing large numbers of studies on the disease. At some point, the NIH should have realized its mistake. Hence, they broke a cardinal rule of science - repeatability. Mainly, the laws of science apply everywhere, so when you have a large number of scientists from different areas of the world reporting the same thing, there is probably something going on.

Nature Abhors a Vacuum

So you now have a large portion of the population developing chronic gastrointestinal illness in Oregon, California, and elsewhere. Their regular doctors, informed by the CDC and NIH, knew nothing about the disease. In fact, based on the studies the CDC has been advocating, patients should told that they have 'irritable bowel syndrome' and kicked out of their office for taking up the physicians time. There is actually an entire line of research now being funded at the NIH that seeks to "prove" that such patients just go to the doctor because they like attention.

So what did newly infected patients in Oregon, California, and elsewhere do? They looked for potions and spells. Based on what I hear from patients, the Blastocystis epidemic on the West Coast has been a key factor in driving the demand for alternative medicine.

In the US, the market for AM has exploded. One study indicated that 62% of US adults use some kind of AM (Med Ad News, October 2005). The CDC states that 74.6% of Americans have used CAM, and that the average American spent $60 on various remedies in 2005.

It's remarkable that in an age where science is delivering most of our advancements, such as cell phones and computers, medicine is turning back the clock. People in scientific fields should take note of this. Science isn't just about ignoring things which are disproven. It's about acting on things that are proven with scientific methods. By refusing to speak up for the scientists who were attacked by loud-mouthed doctors, science has lost a major battle for the public's trust. The most prevalent chronic gastrointestinal infection in the US today is being addressed using philosophies from the Middle Ages because of this.

A study from Australia, published in Melbourne Age, highlighted the issue. Authored byAlastair MacLennan, from Adelaide University's Department of Obstetrics and Gynaecology, the paper reported that:

"Australians now spend four times as much on unproven therapies as on prescribed pharmaceuticals. While a few alternative medicines and therapies are proven to help some patients, what concerns me is the increased usage of unproven alternative therapies, many of which are costing the public more and more each year."

The study was conducted on 3000 Australians, and it compared the use of alternative therapies in 2000 and 1993. Over that time, allowing for inflation, the cost of alternative therapies had increased over 120%. The paper estimated that Australians spend $2.3 billion a year on such therapies. In the US, a similar trend exists, and it won't be long before spending on alternative unproven therapies exceeds US investment in scientific research.

Trick or Treatment?

References:

http://www.scribd.com/doc/32851838/Alternative-Medicine-A-Free-Market-Example-of-Health-Care-by-Barry-Krakov-MD

What if we treated NIH employees the way they are treating us?

2010-08-10T17:43:00.000-07:00

A fair number of people who contact BRF are policemen, firemen, and veterans. We hear from a lot of veterans who contracted Blastocystis infection overseas, and can't find a reliable treatment in the United States.

I'm always struck by how little the NIH and CDC are willing to do for these people. Many of them got sent half way around the world to fight in the Middle East. Others are fighting crime and fires at home. These are people who wouldn't think twice about risking their lives for an NIH or CDC employee, yet those organizations won't even move a piece of paperwork to help cure this disease. Because of their inaction, Blastocystis is now the number one protozoal infection in the United States.

The reason for the colossal indecision? In the 1990's, a number of prominent physicians in the United States took public stands on Blastocystis, before there was any real research available. The ones that sided with the "denialist" crowd - the people who insist that it can't cause illness - could have found themselves eating crow a few years later. Once the scientific community figured out what was going on, University research groups sprang up in Asia and then the Middle East and began publishing study after study showing how sick this disease will make patients. Most of these studies were predicted by the work of our own NIH scientist, Dr. Charles Zierdt, who retired in 1995. And there are now close to a dozen new groups in Europe, Mexico, and even the US that are all looking at the same problem.

Unfortunately, Today, being a denialist is as much a part of these people as being a doctor or an American. And they have scared employees at the CDC and NIH into doing nothing. This is why 2010 will make the fifteenth consecutive year that the NIH has rejected every Blastocystis grant proposal sent to it, and the CDC still insists no action can be taken in the disease because "experts disagree." (read the CDC letter for yourself)

So I got to thinking.....if turnabout is fair play, what if firemen and police began treating NIH and CDC employees the way those employees have treated them:

"Hi, I've been in an accident dirivng to my job at the NIH. Can you send an ambulance?"
"Oh, you work for the NIH. Let me transfer you to our special department......" (new operator) "How do you know you've been in an accident."

"Well, a car drove into the back of my car on I5 just south of Seattle."
"You know, tens of thousands of cars drive over that stretch of road every day. The probability that you had an accident there is very small. Are you sure you aren't jumping to conclusions?"

"The back of my car is caved in. I am bleeding from my forehead"
"OK, you have a bleeding disorder. You should see a specialist about this. But I'm just saying the probability of your actually having had an accident is small. Many people bleed without having accidents, and many people have accidents without bleeding. So saying that you are bleeding because you were in a car accident is really jumping to conclusions."

"But why is the back of my care caved in?"
"Well, we really can't verify you car is caved in. Has this been determined by a professional? But even if it is, that doesn't prove you've been in an accident. It's possible your car caved in some other time, and then once the bleeding started, you looked to see if it was caved in, and you noticed it. When was the last time you had a mechanic check to see if your care was caved in?"

"You are an idiot."
"...and bleeding can be caused by many things. There was just a study that found many people get nosebleeds due to stressful life events. This is called a conversion disorder. You sound like you are under stress. Maybe you should see a psychiatrist about the bleeding."

"I am under stress because I'm bleeding from my forward. Would you just send an ambulance?"
"Well, we really can't know if you've been in an accident or not, or what the exact cause of your bleeding is. We can give you the web address of a patient support group for hemophiliacs. You could work with them to raise awareness about your bleeding problem."

Why do we invest all our infectious disease resources on bioterrorism?

2010-08-03T20:04:00.001-07:00

The American Society of Microbiology (ASM) is a non-profit professional organization of scientists and researchers with an interest in microbiology in the US. This organization has helped to shape US policy toward infectious diseases directly, and also indirectly by fostering communication among its members.

The ASM tracks congressional legislation, and last month I took a look at the bills it was tracking in Congress. You would think these would be dealing with things like MRSA, which is killing around 40,000 people each year in the US. Or pneumonia, which kills even more. But the diseases that you and I contract are barely represented in legislation. Here's what Congress is working on:

Current Legislation

Key Bills in Congress

Bill Name

Number of Sponsors

Position

S. 1054 - Job and Economic Growth Reconciliation Act

1 (1 R)

H.R. 3804 - Preservation of Antibiotics for Human Treatment Act oof 2002

36 (1 R, 35 D)

Biological Agents - Legislation

Bill Name

Number of Sponsors

Position

S. 1765 - Bioterrorism Preparedness Act of 2001

46 (17 R, 1 I, 28 D)

S. 1706 - Bioweapons Control and Tracking Act of 2001

1 (1 D)

S. 1661 - Deadly Biological Agent Control Act of 2001

3 (1 R, 2 D)

S. 1635 - Pathogen Research, Emergency Preparedness and Response Efforts Act of 2001PREPARE Act

1 (1 R)

H.R. 3448 - Public Health Security and Bioterrorism Response Act of 2001

41 (20 R, 21 D)

H.R. 3338 - Department of Defense Appropriations Act, 2002

1 (1 R)

H.R. 3310 - Bioterrorism Preparedness Act of 2001

21 (4 R, 17 D)

H.R. 3306 - Deadly Biological Agent Control Act of 2001

2 (1 R, 1 D)

H.R. 3255 - Bioterrorism Protection Act (BioPAct) of 2001

102 (102 D)

H.R. 3162 - USA PATRIOT Bill

1 (1 R)

H.R. 3160 - Bioterrorism Enforcement Act of 2001

1 (1 D)

You may notice a pattern - almost all Congressional attention (and much of our funding) is going to combat bioterrorism.

While security is always a good thing, I have to ask, just how dangerous is this problem? We have already had multiple attacks which have succeeded in killing....about 5 people. That's fewer people who die in car accidents on a busy labor day weekend in New England. People have joked that the best way to get our medical community to address infectious diseases is to have al-Queda try to weaponize them. Who knows, maybe they have done this already, and that's why so many people are dying of MRSA, and developing chronic illness from Blastocystis.

Yes, what if somebody did something that killed 40,000 people. Oh, wait. We already have a bunch of diseases like that. And the ones we know about are just the tip of the iceberg. For every MRSA-like disease, there's another one out there producing chronic illness, sapping the economy, and our country's strength.

Can 12% of the US population be infected with something bad?

2010-07-31T14:21:00.000-07:00

In 2006, I went to Salem, Oregon State's Capitol, to provide testimony in favor of a bill which would have made Blastocystis a reportable infection in Oregon. That would have allowed us to understand how many cases were being diagnosed each year, and to better track the spread of the disease.

The opposition to HB 2699 came, ironically, from the state Department of Human Services, specifically the office of the State Epidemiologist who sent one of his employees, Dr. deBess to testify against the measure. He stated that it would have been impossible for Blastocystis to cause illness, because almost 10% of the State of Oregon is infected.

This part is true - Oregon has one of the highest infection rates in the country. Depending on the study, about 50% - 100% of people who contract Blastocystis will develop symptoms. This is why people get sick when they relocate to Oregon from states like Idaho, Kansas, or Oklahoma. Unfortunately, when you get sick - it's your problem. You clearly aren't going to get much help from the State Epidemiologist. The NIH shut down all US Blastocystis research in the mid-1990's, when the prevalence started to take off, and their offices still oppose any initiative to provide funding for diagnostics and treatments for patients (for their response to BRF's petition, see the journalist page of BRF's web site, http://WhenDidYouGetSick.org)

But is it possible for a disease to get into 10% of the US population? One good example is the infection Toxocara, which can cause severe symptoms in some otherwise healthy patients. In some regions, 14% of US population is infected with this. So why aren't they sick?

It turns out that most infectious diseases that are successful in humans don't make everyone sick. An example of a disease that makes almost everyone sick is the Ebola virus. People get sick, and die about 5 days later. It doesn't spread very far, because dead people don't spread diseases well. There is a selection pressure that favors diseases which don't kill their hosts, and don't make everyone sick.

Unfortunately, in order to stay in a host, diseases have to play tricks that often involve shutting down a portion of the host's immune system to stay in tact. In some hosts, this doesn't work at all - they clear the organism and get better. In others, it works, but they don't get symptoms. These are the "carriers" of the disease. Typhoid Mary was a carrier of typhoid fever for much of her life, and she infected over a dozen people with it working in the food service industry. The third group represents those who get sick with the disease. What makes them difference? Scientists have found that everyone's immune system is put together slightly differently. This is good, because it ensures that one bug will probably not kill everyone, but it's bad in that different people will get different symptoms when infected with the same microbe.

Medicine consists largely of identifying the patients who are sick because of an infection, treating them, and also making sure others don't spread the infection to those who will get sick from it.

References: Huh Sun, Toxocaria, E-medicine reviews. http://emedicine.medscape.com/article/229855-overview

Blastocystis, Cedars-Sinai, and Radiation Overdoses

2010-07-31T13:37:00.000-07:00

Why Aren't Physicians and Medical Centers Acting on Blastocystis?

People who are sick with Blastocystis often wonder why nobody in the medical community aren't taking action on Blastocystis. The answer may come from an article in today's New York Times that described overdoses of radiation given to patients who were seen at the Cedars-Sinai medical center in California.

The article described how altered settings on a piece of equipment lead to severe radiation overdoses in many patients. More importantly, it described how medical staff would not admit to the problem, and placed an excessive amount of trust in procedures even when it was obvious they were causing harm to patients.

The case with Blastocystis is much the same. If physicians will ignore severe radiation overdoses in patients, why wouldn't they also ignore a long term gastrointestinal illness.

The Decline of Forensic Science in the United States

2010-07-29T11:20:00.001-07:00

In July, the New York Times ran a stuck on a report from the National Research Council that said the country is losing its ability to perform nuclear forensics - the process of examining fallout from a nuclear blast to determine which country produced the fissionable nuclear fuel in the device.

The NRC didn't cover another area which is just as important - infectious disease forensics for parasitic infections. Anyone who has developed unexplained illness after traveling in a foreign country, or even here at home, knows what I am talking about. There are a few diseases US doctors can diagnose readily. But we have no tools, or experts, to diagnose most of the diseases which people are contracting world-wide. That goes for things like Blastocystis infection, as well as Leishmania, Strongyloides, and a number of other viral, bacterial, and protozoal infections.

The two topics - forensic work in nuclear blasts and parasitic infections - aren't as different as you might think. In scientific research in the US, the NSF (and NIH) have had a long-standing policy of simply funding things that scientists want to do. That is, they don't look at their research portfolio, and identify critical areas, and make sure those get funded regularly to maintain a competency in a particular area. Additionally, we lack any kind of national laboratory effort to ensure an ongoing competency in specialized areas of research.

The result? Scientists are dumb. Given the option, they will choose job security, which means they will choose areas of study that ensure they will be readily employable. In infectious disease work in the US, this means studying viruses (like HIV) and bacterial infections. No, we don't need an army of research parasitologists, but we do need 10 or 20 of them available to look at new infections, and amazingly, in the entire US, we don't have a single research parasitologist (there are a handful who look at E. histolytica or Giardia as well as malaria, but they aren't available for new diseases). The problem with nuclear forensics is similar. How are you going to convince a 20-something just graduated from MIT or Stanford to go into a field called "nuclear forensics" where you study bomb blasts. They'd be thinking, "Oh yeah, I'll be able to support myself with that job."

The result? When you get back to the US after having contracted one of these diseases overseas, you will be diagnosed with chronic fatigue syndrome (CFS), irritable bowel syndrome (IBS), an auto-immune disease, or a psychiatric disease. Just ask the Gulf War Veterans. They've been sick for over 20 years, and the best explanation anyone has come up with is that they were affected by those Weapons of Mass Destruction that Saddam had, or didn't actually have as the case may be.

References:

Broad, W. US Nuclear Forensics Skill is Declining. New York Times, July 29, 2010

http://www.nytimes.com/2010/07/30/us/30nuke.html?_r=2&hp

The Financial Meltdown, Bogus Loans, Bogus Grants

2010-07-23T16:35:00.000-07:00

July 16, 2010. This week, Obama signed into law a financial reform bill which, among other things, stops one of the most egregious practices the developed around home loans in the last decade. Mainly, loan officers received kickbacks for steering customers into higher interest loans, and for higher dollar amount loans.

A loan officer might take someone with $100,000 of equity in their home who needed $5,000 for an emergency. They would encourage them to as much equity out of their home as possible, and then steer them into a 7% or 8% interest loan, instead of the 6% loan they had. The loan officer would get a kickback, sometimes in the tens of thousands of dollars for large loans, for their service.

Many people wonder why a research group doesn't just infect some animals with Blastocystis, find out what to use to treat it, and then distribute the information. After all, Blastocystis from 'IBS' patients makes animals sick, and by scientific criteria that has been established for 150 years, curing the disease is the next logical step.

One of the big problem is that no US research group wants to start with a "dinky" study to isolate an organism, infect an animal, and find a cure. Yes, that type of project is immensely valuable, and has been the standard for infectious disease research for some time. But it would be difficult to justify a grant for more than a few hundred thousand for such a project. And it wouldn't take long enough for graduate students to pursue a PhD thesis.

Yes, that's right. Studying Blastocystis isn't expensive enough. You see, when US researchers get money from the NIH, a percentage goes to the University they work for (sometimes 50% or more). The process is called an "overhead rate" or "expense capture." Over the years, Universities have caught on to this, and they now hire professors who are able to produce large NIH grant proposals. A professor who asks for $300,000 for a 1-year project would only earn the University $150K. But a 5-year, $10 million project. Now that's some cash.

This may explain why, when I talk to US researchers, they don't talk about identifying a specific infection in patients. They want to genetically sequence the patient's entire "biome", which means studying every organism in the patient's body. Now, that's going to take some cash, and years.

In both cases, there is a substantial economic pressure, in the form of the "kickback" that goes to the loan officer, or to the University. The result is that most medical research today is being driven by greed, plane and simple. Of course, the bogus grant has no more value to the patient than the inflated homeowner's loan, and this is how Washington is sickening the country.

Can the US continue to be the research lab to the world?

2010-07-23T14:16:00.000-07:00

July 23, 2010. NPR covered a story today that quoted the national rate for HIV infection in the US as 0.46%. However, in some poorer areas of the US, the rate was as high as 2%. The researcher interviewed indicated that any prevalence over 1% would be considered an epidemic.

Most Blastocystis patients would find this amusing, since that infection is now found in 10-20% of all US citizens, up from less than 3% before 1990. And based on studies from Europe and Asia, where research is still permitted, 50% to 100% of people infected will have symptoms. Individuals over 40 may be more likely to have severe symptoms.

Currently, we spend about 60% of the country's infectious disease budget on this infection, which impacts less than 0.5% of the population. Why is that? A major reason is the high prevalence in Africa and other countries overseas. This is a recurrent theme in medical research. Mainly, we're spending huge amounts of money to address diseases overseas which are almost non-existent in the US, while keeping US patients entirely in the dark. In the case of Blastocystis, this might not be so bad, if the US would accept research from the rest of the world that identifies this organism as a major health problem. But we haven't done this. In addition to shutting down all domestic Blastocystis research, the NIH and CDC have refused to consider the validity of any research performed at national research centers in Denmark, France, China, Singapore, Malaysia, Saudi Arabia, and Egypt.

The story described the development of a gel which reduced the rate of AIDS infection in South African women. A listener asked if the gel could be added to condoms. Dr. Anthony Fauci, head of the National Institutes on Allergy and Infectious Diseases noted that "a condom is a physical barrier. If you have that, that is all you need. You don't want to add lubricants to that, because it can make the condom break."

So essentially, we're talking about research to help people who won't use condoms, or made a decision not to use a condom. In the case of Blastocystis, patients who were infected drank a glass of water, or ate food contaminated with the organism. Or they were sent to the Middle East to fight in a war, and came back with the infection. The disease hits people who have taken every care possible with their lives.

We Need NIH Reform Now
Today is July 16, 2010, and it has been 5317 days (over 15 years) since the NIH committed any money to address Blastocystis infection in the US. Today, 30 to 60 million US citizens are infected, and an average of 1-2 million additional cases are added every year. People with Blastocystis are told they have irritable bowel syndrome (IBS) - mainly, they are insane, and that because they are insane, they have diarrhea, and their diarrhea is their own fault.

In a discussion with a number of health professionals, one of them suggested that Blastocystis researchers apply to study the organism in AIDS patients, indicating that there was money available for AIDS research. So apparently we can address infectious diseases as long as they impact the 0.46% of the US population with AIDS.

It's hard to imagine any organization being able to justify this kind of behavior, and we don't think the NIH could do this in front of a Congressional panel. We'd like to see that kind of panel setup, along with long-term reforms which tie the levels of funding for infectious diseases to the prevalences of those diseases in US residents to ensure that federal funds are spent equitably, and in a manner consistent with the needs of the US population that pays for the research.

Cuban Spies, and Disagreeing Experts

2010-07-23T12:43:00.000-07:00

July 16, 2010. Last year, the CDC replied to a request from Representative Kurt Schrader to address Blastocystis infection by stating that because "experts" disagree, the CDC would take no action. Today, Walter Kendal Myers, a high level intelligence officer with the US State Department, was sentenced to life in prison without the possibility for parole for passing US secrets to Cuba. Interestingly, he did not do this for the money - he sympathized with the Cuban regime.

Clearly, Mr. Myers was a US expert in intelligence. He held a high-ranking position, and was a 30-year veteran of the State Department. So he probably knows a lot more about US policy than your or I do. But believed that the Cuban government should have access to US secrets. So experts disagree about US policy too. Does that mean that we can not have any kind of foreign policy? Of course not. Experts disagree about all sorts of things.

Experts even disagree about whether HIV causes AIDS. Dr. Paul Duesberg, believes that HIV is caused by the toxic effects of illegal drug use. He's not just any expert - he's a Nobel Laurette, and he won the Nobel Prize for his work on retroviruses, of which HIV is a member. His argument is so convincing that the country of South Africa adopted his view as National Policy, and stopped all of their HIV prevention programs, and also made it difficult for anyone to get AZT treatment. Groups have estimated that this action killed over 100,000 people.

Clearly, we have many examples of disagreement among experts. In the case of Blastocystis, the CDC will not identify who the experts are that are blocking all US research into Blastocystis, so we can't judge for ourselves how credible their opinions are. We don't even know if they are experts in protozoa. Perhaps they are experts in botany or astrophysics.

It is the responsibility of institutions to develop policies in the presence of disagreement. But in the CDC is an agency that has abdicated that role. And we are worse off because of it.

North Korea, Blastocystis and Decision Making

2010-07-23T12:13:00.000-07:00

July 16, 2010. In March of this year, North Korea attacked and sunk the South Korean warship Cheonan. Secretary of State Hilary Clinton condemned the action, and gave a "stern warning" to North Korean leader Kim Jong-Il. On July 21, the United States announced new sanctions on North Korea for the sinking, and also indicated the US would take place in war games with South Korea which are designed in part as retribution for the sinking.

But how do we know that North Korea sunk the ship? Evidence was collected by professionals, analyzed by US officials, and a decision was made. There are some inherent limitations to such an investigation, as there are in investigation any event which has happened in the past.

The fact is, we make decisions all the time at the Federal level without perfect information. Then we act on those decisions as a nation. Ultimately, there is no such thing as perfect information, and the costs of doing nothing are high enough that we do, in fact, act on the best available information.

This is not the case in infectious disease like Blastocystis, which is now the most prevalent parasitic infection in the United States. Despite the findings from a 15-year NIH-funded study conducted by an NIH scientist, and subsequently over 100 similar studies from around the world confirming this finding, neither the NIH nor the CDC will take any action at the Federal level to help patients get reliable treatments and diagnostics. In fact, after the NIH scientist published one of the longest reviews on Blastocystis in 1993, the NIH shut down all research into the organism, and NIH officials began directing scientists not to apply for grants into studying the organism.

What we can see is the CDC and NIH lack the kind of executive decision making capability that is present in other Federal agencies. Groups like the FBI and CIA routinely collect information and make decisions. Other groups like the USDA and FDA also collect information and make decisions that impact millions of people.

Blastocystis can not be cured unless proper treatments are identified and made available to patients, but the NIH controls most of the country's spending for biomedical research, and had announced that it considers clinical investigation into Blastocystis "infeasible" due to lack of decision over its status as a pathogen. Older drugs like dehydroemetine were used widely un the US until the 1980's, and could possibly be used to cure patients, but their use is controlled by the CDC, and Blastocystis patients do not qualify for the use of them.

This year, or sometime next year, the number of studies indexed in the NIH's database will exceed 1000. Almost all of the studies that have investigated whether the organism produces disease have confirmed it is a pathogen, and new studies show that many patients will stay sick forever unless they are treated. Most of the studies are written in English, and are entirely accessible to the NIH and CDC. Despite this, neither agency has been inclined to make any decisions.

We need to recognize that Blastocystis is more than anything else, a bureaucratic disease. It was created and persists due to negligence from professionals who have been given authority, but refuse to exercise it.

If only the CDC would approach Blastocystis as they do Dengue

2010-07-22T22:35:00.001-07:00

July 13, 2010. This week, the American Society of Microbiology reported that a CDC alter has shown that roughly 5% of the population of Key West, Florida has been infected with the Dengue virus at some point.

The story begins, "After three initial locally acquired cases of dengue were reported in 2009, scientists from the CDC and the Florida Department of Health conducted a study to estimate the potential exposure of the Key West population to dengue virus. Dengue is the most common virus transmitted by mosquitoes in the world. It causes an estimated 50 million-100 million infections and 25,000 deaths each year."

In other words, the vast majority of people infected recover without dying. Despite this, the CDC jumped into action:

"For the study, a total of 240 blood samples were collected from randomly selected households in Key West and tested for the presence of virus or evidence of a previous dengue infection. Among the samples, 5 percent had dengue active in their systems or had dengue antibodies, suggesting that the disease had been experienced within the previous three months of the study. Key West residents, physicians and hospitals were also enlisted in a surveillance program to identify new cases, and mosquitoes were tested for the virus. CDC and the Florida Department of Health continue to monitor cases in and around Key West. As of the end of June 2010, there have been 12 additional cases of locally acquired dengue reported from Key West and surrounding areas. "

It is remarkable the CDC has these resources to divert to Dengue, when they refuse to take any action on Blastocystis, a disease which does produce long-term symptoms in most of the patients who are infected. Blastocystis is arguably a more useful disease to study, since it is theroetically possible to cure patients if the right antiprotozoal drug can be found.

To date, the CDC has ignored all the US studies identifying Blastocystis cases. One pair of studies identified over a dozen cases of long term illness in Corvallis. Although public money was used to research the Dengue cases, patients had to use their own money to support the Blastocystis studies. BRF organized and provided funding for these studies, which were published in Parasitology Research.

References:

Jones MS, Whipps CM, Ganac RD, Hudson NR, Boorom K Association of Blastocystis subtype 3 and 1 with patients from an Oregon community presenting with chronic gastrointestinal illness. Parasitol Res. 2009 Jan;104(2):341-5. Epub 2008 Oct 16. Erratum in: Parasitol Res. 2009 Jan;104(2):491. Boroom, Kenneth [corrected to Boorom, Kenneth]. PMID: 18923844

Whipps CM, Boorom K, Bermudez LE, Kent ML. Molecular characterization of Blastocystis species in Oregon identifies multiple subtypes. Parasitol Res. 2010 Mar;106(4):827-32. Epub 2010 Feb 2.PMID: 20127113

Hogue, Theresa. Has tiny parasite invaded from Middle-East Wars? Corvallis Gazette Times, November 17, 2008.

Who stole the NIH? And how do we get it back?

2010-07-22T22:27:00.001-07:00

I grew up in the 1960's and 1970's. For those of you who were born after that time (or those who weren't paying attention), this was a great time to be a kid, if you don't like having infectious diseases.

Everybody got vaccinated for smallpox. Of course, we still had smallpox then, but getting rid of it may have caused its own problems. Some researchers suggest that this vaccination may have helped slow the spread of HIV infection, and removing it from the list of vaccinations was responsible for the emergence of HIV in Africa.

TV stations ran ads for the "rubella umbrella" to get kids vaccinated for that. Everybody in my school got tested for TB, as school agencies partnered with government groups to wipe this disease out in the US.

This was the era when the NIH helped discover the bacteria that caused Lyme disease. To give you an idea of how seriously people took infectious disease research, read this 1970 paper, written before the Norwalk virus had been discovered, and people just started vomiting for no reason. Researchers at the NIH took stool filtrates and fed them to volunteers, showed that they got sick, and determined there must be something infectious involved (they didn't have the technology we had today to find viruses). Dr. Herbert duPont is now at the University of Texas, leading the effort to study GI infections like enterotoxic e. coli.

We didn't have syndromes in the 1970's - we had researchers who put the effort into finding the infectious disease. Instead of doing the experiment, the NIH could have simply defined the Norwalk virus as "acute vomiting syndrome" and claimed that some psychiatric cause was responsible. They could have claimed Lyme disease was an auto-immune disorder produced by exposure to plastics.

That nonsense started in the 1990's, and has been going on for 20 years now. The mainstream infectious disease researchers left the field, and by in large, have not been replaced. Government regulations have made it more difficult for scientists to get acccess to patients. And worst of all, US Universities have developed a huge lobbying effort at the NIH, and have worked to direct almost all of their funding towards efforts which provide a bigger return on investment for those insitutions, like cancer or AIDS research. Other projects which promise huge amounts of long-term funding are immensely popular with Universities, like the human genome project, which consumed $3 billion (that's billion with a B) and hasn't produced any of the block-buster treatments promised by researchers, according to a New York Times article published earlier this year. “Genomics is a way to do science, not medicine,” said Harold Varmus, president of the Memorial Sloan-Kettering Cancer Center in New York, according to the New York Times article.

The result of the abandonment of infectious disease work is that we've got a half dozen syndromes now, all of which are likely due to infectious diseases. Chronic fatigue syndrome, irritable bowel syndrome, cyclic vomiting syndrome, Gulf War Syndrome have all been become popular diagnosis in the last 20 years. Patients who contract the infectious diseases that underlie these illnesses are as out-of-luck as a Lyme disease patient would be in the 1940's. The infections that cause these illnesses are spreading, and the NIH and CDC are doing nothing to stop them. There is nothing more terrifying than having to manage an infectious disease which isn't acknowledge by the medical community.

Universities Cash In

The NIH was originally created to fund research activity that was valuable to the public health, but would not be funded otherwise. The NIH used to maintain national labs that did infectious disease work, but most of these have been shut down. Today, most of the NIH's funding goes to researchers in the form of grants, which range from a few thousand to the millions. The NIH writes about 50,000 of those each year. So how is it missing so many infectious diseases? The people who approve the grants are mostly college professors working as volunteers on committees. In other words, the same small community that gets the grants approves the grants.

That's like outsourcing our national defense to munitions makers, and then letting them manage the spending. Yes, they are experts in military conflict, but you will quickly see that every problem has a solution that involves giving a lot of money to the institutions represented by committee members.

The process by which a group succeeds in influencing a government body which has control over it is called "regulatory capture." The term was first applied to bodies which governed railroads. The railroad companies soon figured out that they could make huge profits by influencing those groups to regulate them in a certain way - for example, by stamping out the competition.

The Medical-Research Industrial Complex

The problem with letting college professors run the show is that Universities have an endless apatite for money. In good times, they need money to expand. In bad times, they need money to pay for the expansion they made in the good times. It's no coincidence that both college tuitions and medical expenses have risen at two to three times the inflation rate for the last 20 years. Unfortunately, it's not easy to cash in on infectious disease work, especially work done to identify new infectious diseases, or to show that they are spreading. Universities typically have no interest in this, preferring to stick to research that can generate patents, alliances with businesses, and more capital. In fact, the latest guidelines from the NIH for evaluating grant success specifically prioritize the grants ability to patents and spin-off businesses, and then the grant's ability to produce papers that get referenced a great deal. Any improvement on human health is a distant third place, next to environmental impact. So whether a grant improves human health is about as significant as an office paper recycling project.

The NIH has become a trade union for research scientists and Universities, and largely acts to simply funnel money to those groups. In one of the most remarkable displays of self-interest, the NIH just gave away over $100 million directly into the bank accounts of researchers to pay off their loans. That's a neat way to use public money. Maybe some of the rest of us can get some federal money to pay off our debts.

Infectious diseases spread when they are ignored. The loss of the NIH is producing a real and sustained impact on communities and families, as they encounter more infectious diseases which doctors have no idea how to diagnose or treat. In fact, the most serious aspect of the takeover of the NIH by Universities is that researchers who used to be working on identifying infectious diseases are now spending all of their time trying to figure out how to please the NIH. That is, by spending more money, and spending it in the wrong places, the NIH has actually shut down much of the research that was going on in the US. This phenomenon has also been observed when aid organizations give away food in areas, and then put local farmers out of work, which creates more poverty. Sometimes giving away money and food distorts the system, and causes more problems than you had when things started.

How do we get the NIH back?

BRF has been proposing a Patient Protection Initiative to ensure that the CDC and NIH are focused on the jobs for which that Congress chartered them, mainly curing, treating, and preventing human disease. The initiative will require that the CDC begin tracking infectious diseases in the US in a systematic manner, and reporting information about the prevalence of disease and the reliability of diagnostics and treatments. Currently, whether the CDC reports this information depends on the disease, who is in charge of that section at the CDC, as well as other political concerns. It would be as if the EPA decided to report a great deal of data on lead, but nothing on mercury, just because lead was produced in the US, and reporting that information would be controversial.

The initiative would also require that the CDC identify the most significant problems patients face in each infectious disease, and that the NIH provide a narrative on how it is addressing those problems. The NIH would also be required to report how much money it is spending on each infectious disease - that information isn't available currently, so it's difficult to determine if the NIH is ignoring certain diseases.

Finally, one of the biggest reasons scientists have left the field of infectious diseases is the amount of red tape created by the federal government associated with performing a human study. In the 1950's, a scientist who wanted to look for bugs in a fecal sample from a patient could simply find a patient, get a sample, and look at it. Today, this process would take several months, require multiple levels of approval, and the scientist could be sued for any number of violations of federal law if he or she made a small mistake. The Patient Protection Initiative would require the federal agencies to fix the problem created at the federal level by this legislation. Namely, they would be required to provide a legal interface for researchers by which they could obtain samples from patients with diseases.

References:

Wade, Nicholas. A Decade Later, Genetic Map Yields Few Clues. New York Times, June 12, 2010

New Age Drivel Wrecks the American Miracle

2010-07-18T18:43:00.001-07:00

Wrecking the American Miracle

Tom Brokaw's documentary on the "Greatest Generation" talked about the accomplishments that people my father's age made. These include fighting back destructive political movements like facism, winning the Second World War, developing medicines, providing public education, and many others. It may be a cliche that the achievements of the parents are squandered by the children, and that may be truest in the area of medicine.

When I was growing up in the 1960's and 1970's, the people in charge - doctors, researchers, government officials - teamed up to stop the spread of infectious diseases, and cure the patients who had them already. My childhood was one of TB screenings, vaccinations and public service commercials encouraging parents to vaccinate their kids. While this was going on, an army of researchers was working at the NIH to identify, catalog, and characterize new infectious diseases, and ones that were emerging.

Back then, medical care was cheap, and most people in my community were not sick. Here's a copy of my medical statement from my doctor. That's right, $10 to see the doctor, and about five visits in my first 10 years of life.

That's a big change from what we found in Corvallis when we moved here from Idaho. About half of the families here with children have at least one member with chronic gastrointestinal illness. Discussions of visits to "pediatric gastroenterologists", extensive exclusion diets, multiple food allergies, and the like are common. We didn't understand why, until 2003, when I contracted the disease that 10-20% of the State of Oregon carries - Blastocystis.

New Age Drivel

New diseases have been emerging in the US since we started recording history. Native Americans were decimated by smallpox. Immigrants from Europe and China brought other diseases, so much that Ellis Island was more of a medical facility than an immigration center. Before the 1990's, the federal government considered addressing these diseases - documenting them, and working to find treatments - to be one of its functions. Science was viewed as something that was here to help us.

That changed in the 1990's, as the children of the 1960's took control of the instruments of government. The "New NIH" is based on New Age medicine, and a narcissistic view of science as something that should be personally pleasing to the researcher. And that's wrecking this country, one family at a time.

The first thing that went out the window at the NIH was the ability to investigate new infectious diseases. New Age philosophy advocates living in harmony with nature, and infectious diseases are natural, so they can not be bad. According to New Age adherents, disease comes from "stress and toxins." I'm not making this up. In 2007, I wrote a paper for the newsletter of the United Kingdom's leading charity to address "irritable bowel syndrome" - a disease where many people get diarrhea that doesn't stop. The story described the research that was showing that people with IBS didn't have a disorder- they just had an infectious disease that wasn't getting diagnosed and treated properly. Dr. Nick Read (MD), the leading consultant to the UK charity, and a prominent researcher world-wide corrected me. Disease was not caused by microbes, since many people had microbes but did not have disease. Disease was caused by "stress and toxins." That included not just chronic diarrhea, but also diseases like tuberculosis, since many people test positive for TB, but do not have symptoms. This is coming from a medical doctor, and distinguished researcher. As proof, Dr. Read cited English historical novels.

Incidentally, many people have infectious diseases but do not have symptoms. They are carriers. Typhoid Mary is a carrier. There is no reputable body of scientists that believes the carrier state is related to stress and toxins. In the last 10 years, scientists (real scientists - the kind that follow the rules) have found a series of genetic mutations present in humans and animals that influence symptoms seen in infectious diseases. Scientists can now breed mice to either get sick temporarily, to get sick permanently, or to not get sick when exposed to certain infectious diseases.

But back to the real world. The stress-and-toxins package is what the flower children are foisting on us now. Science used to be about laboratory experiments, repeatability, and developing an understanding that was consistent in a larger body of knowledge. That's gone out the window in the new NIH. You can see it in their own publications. Their job is not curing diseases - it is "supporting scientists." The NIH doesn't drive medical practice. They "enable people." Their usefulness is judged by the percentage of applications that are approved.

In a post-60's world where everyone is supposed to be a "winner", this may be a positive improvement, but it is disastrous for medicine. One example is a grant, close to $1 million, to study "liver energy" as a cause of illness in humans. The grant borrows from ancient Chinese texts. Is this science? Is there any reference to "liver energy" in any text of chemistry, physics, or biology? If people submit a thousand proposals to study "liver energy" as a cause of illness, the best thing would be to reject every one of them. But the NIH is enthusiastically funding this.

They are NOT funding any investigations into infectious diseases, especially those which are have spread epidemically in the US like Blastocystis. Again, these run into the problem that New Agers want to believe Nature is warm, friendly, and fuzzy. People who get sick are party-poopers. According to one popular New Age philosophy, called "The Secret", people who get sick deserve what they get, because they are sending out negative vibrations.

PHOTO: New Age drivel on the rise. Dr. Oz, a board-certified physician, agreed with a guest on a June 8, 2008 Oprah that our current state of health may be influenced by past life experiences.

Conforming to the Doctrine

We've a little over 15 years of this - most of the exploratory infectious disease work was shut down in the 1990's, as AIDS was emerging the feeling was that performing any work into anything other than HIV would be foolhardy. Today, we spend 60% of our infectious disease research budget on AIDS, a disease which has infected less than 0.5% of the population. Diseases like Blastocystis, which cause chronic diarrhea, abdominal pain, and other symptoms in 10-20% of the population are "embargoed."

This is not a question of money, however. The NIH is dumping tens of millions of dollars into studying patients who have Blastocystis infection. They just call it something different - "irritable bowel syndrome." These people are being studied because they are sick, and as such we can learn some kind of New Age truth from them, about how stress and toxins cause disease. The researchers in the US who study them get multi-million dollar grants to study "mindfulness" as a treatment. They talk about "two-way signaling of the brain-gut axis." Others discuss how neurolinguistic programming (NLP), a treatment that grew out of the transformative movement that brought us dianetcs and EST, can be used to cure patients.

They are NOT funding any investigations into infectious diseases, especially those which are have spread epidemically in the US like Blastocystis. Again, these run into the problem that New Agers want to believe Nature is warm, friendly, and fuzzy. People who get sick are party-poopers. According to one popular New Age philosophy, called "The Secret", people who get sick deserve what they get, because they are sending out negative vibrations.

This is not a question of money, however. The NIH is dumping tens of millions of dollars into studying patients who have Blastocystis infection. They just call it something different - "irritable bowel syndrome." These people are being studied because they are sick, and as such we can learn some kind of New Age truth from them, about how stress and toxins cause disease. The researchers in the US who study them get multi-million dollar grants to study "mindfullness" as a treatment. They talk about "two-way signaling of the brain-gut axis." Others discuss how neurolinguistic programming (NLP), a treatment that grew out of the transformative movement that brought us dianetcis and EST, can be used to cure patients.

Breaking the Rules

Science has rules. The rules were created because before science, people wasted an enormous amount of time making things up that proved not to be true. These rules say things like, "A scientific fact is a hypothesis provable by experiment." Or that new scientific ideas generally need to fit within our existing understanding of the Universe. Or that science should be repeatable.

By breaking rules of science, the NIH is wasting a lot of time and money. The new idea at the NIH is about parochialism. Namely, science in the United States is not the same as science somewhere else. We can ignore Blastocystis research around the world, because we have a special understanding here. That understanding does not have to be based on experimental evidence.

Overall, this idea takes us back 200 years in medicine, to the time when interventions by doctors probably killed more patients than they helped. We're seeing the return of "patent medicine" - herbal concotions brewed up by physicians and sold to patients without any kind of testing or verification of efficacy. With the elimination of investigatory work into infectious diseases, we're seeing the rise of personalized world-views, with groups of physicians developing ways of understanding human disease which have no basis in experimental practice.

Wrecking America One Family at a Time

As I said, the rules were put in place to defend patients, and as the NIH breaks them, patients suffer. When an infectious disease like Blastocystis gets into a community today, doctors have no reliable diagnostics or treatments. Public officials get no guidance, or the wrong guidance from Washington. In Oregon, the CDC provided guidance to the State of Oregon which resulted in the defeat of a bill that would have helped track Blastocystis infection, while NIH officials still advise patients that Blastocystis can't cause any kind of disease under any circumstances. These statements aren't based on any kind of reliable scientific study - they are based on a faith in New Age medicine, and maybe the desire of public officials to to evade their professional responsibility.

The state of denial takes a huge toll on families, as they run from doctor to doctor trying to find out what is making them so sick? It is extraordinarily expensive, and possibly cruel, to infect people with a disease, to have all the tools to identify and potentially treat the disease, but then to insist that some elusive factor must be responsible for the illness. Even those who aren't sick pay for this. In areas of the US where Blastocystis now infects 10-20% of the population, the disease may play a major role in the high cost of medical insurance, which now runs $13,000 per family.

The process causes families to run down their personal savings - I've heard from more than one family that has lost their retirement savings to the medical profession trying to get this disease diagnosed and treated. More significantly, many people who contract the disease won't be able to work due to severe fatigue and cognitive impairment. Others will only be able to find employment in low-wage jobs.

If our parents were the "Greatest Generation", what should we call the generation that is in control of Washington? The Least Generation?

References:

1. NY Times http://www.nytimes.com/2010/07/18/business/18choice.html?pagewanted=2&hpw

Who is more scientific? The engineer or the doctor

2010-07-16T16:10:00.000-07:00

Another research group in Egypt just published a paper showing that Blastocystis infection kills laboratory animals in experimental infection. Despite this, in the United States, we have now gone 15 years without the NIH approving a single study to help treat patients with this disease.

The NIH claims that "experts disagree" so they will take no action.

In engineering, when you do a scientific experiment, and it yields a result, you then follow what that result does. And you often don't do anything without doing an experiment. Engineers hinge their futures on scientific experiments every day. Companies that don't do the right experiments go out of business. This isn't true in medicine - people will pay just as much for useless treatments and information as they will for ones that work.

Engineering failures are often spectacular, and make headline news. When there was a minor flaw in an Intel microprocessor, that made the headlines. A defect in the antenna on the Iphone-4 is headline news as well, and prompted immediate congressional intervention.

Medical failures often get ignored. Medicine is different. In medicine, you do the scientific experiment. Often, if it disagrees with what you're doing, then the data gets buried, and doctors continue doing whatever it was you were doing before.

Physicians will also develop practices without even doing one experiment, and follow them for a hundred years. Blood letting was a good example. It got used until the early 1900's to treat everything from cholera to (yes) blood loss. General Grant was said to have died from a blood letting treatment applied by a physician who was treating him.

It wouldn't have been hard to show that blood letting is useless. At any time, someone could have grabbed some farm animals, and showed that blood letting wasn't helping anything, and probably was making people sick.

Science, Climate Change, and Blastocystis

2010-07-14T15:50:00.000-07:00

July 14, 2010. In May, 255 scientists from the National Academy of Scientists wrote to the journal Science to protest the "assault on climate change scientists" arising out of documents that were leaked from a lab showing scientists had falsified results. The complaint goes onto say that:

"Like all human beings, scientists make mistakes, but the scientific process is designed to find and correct them. This process is inherently adversarial—scientists build reputations and gain recognition not only for supporting conventional wisdom, but even more so for demonstrating that the scientific consensus is wrong and that there is a better explanation."

This may be small comfort to patients with Blastocystis infection, as we enter the 16th year in which the National Institutes of Health has refused to provide a single penny to identify a treatment for the disease, stating that whether this infection is causing disease is undecided in the eyes of the NIH. What is remarkable in the case of Blastocystis is the volume of scientific papers that have accumulated from outside the United States identifying the organism as disease causing, and the nature of the advanced studies being done on Blastocystis overseas.

Chinese researchers have been developing animal models for the infection for years. Researchers in Malaysia are identifying the components of Blastocystis which down-regulate immune functions in humans. One of the longest running labs in Singapore has started doing genomic work, and also identifying host-parasite interactions. The Pasteur Institute in France has also chimed in with phylogenetics work, while a WHO Coordinating Center for Parasitology in Australia has done large studies on Blastocystis subtypes in zookeepers and the animals they look after.

But in the United States, you wouldn't know any of this is going on. The piece that the scientists left out was that if you promote a theory, and someone proves you are wrong, you lose status. The NIH has been funding a series of researchers who support a competing theory to what the rest of the world says. They believe Blastocystis is harmless, and patients have IBS, which is caused by a mechanism that they are going to discover with more money from the NIH. They've been saying this for 20 years, but still haven't discovered it. Unfortunately, their work dominates US medical thought, and they have enough influence to make sure that people won't apply for funding, or if they apply, it won't be granted.

This is where science breaks down, and it's the topic of research by Dr. Fran Collyer. She contends that much of what we take as "science" is culturally determined, and strongly influenced by rivalries between research groups. This may be especially true in medical science, because there are few economic forces driving physicians and scientists toward factual explanations. Indeed, for most of human history, physicians had lousy ideas about what caused illness, and probably killed more patients than they cured. Blood letting was an acceptable therapy for dozens of illnesses until the early 1900's.

The NIH actually had one of the leading research efforts in the world until the mid-1990's. The 15-year effort found Blastocystis to be disease causing and identified most of the symptoms that patients are reporting today, and also noted that the drug metronidazole wasn't working anymore and needed to be replaced. That was 1993. The NIH shuttered the effort in 1995, following complaints from two physicians at an HMO in California. No grants have been approved since then, and researchers have told BRF that the NIH has indicated that in their view, there is no proof Blastocystis is causing disease. NIH replies to petitions and congressional requests have been met with similar statements. BRF estimates that there are now 30-60 million cases of infection in the US, most of them acquired in the last 15 years, and most patients will remain sick until the end of their lives unless a treatment is developed.

---

The letter from the climate change scientists goes onto say, "we can ignore the science and hide our heads in the sand and hope we are lucky, or we can act in the public interest to reduce the threat of global climate change quickly and substantively."

How I wish they would change "global climate change" to Blastocystis and re-send that letter to the NIH.

Does Blastocystis Make You Stupid?

2010-07-14T12:43:00.000-07:00

March 3, 2010. Researchers have been identifying Blastocystis as a cause of diarrhea for over 20 years. But many patients also report neurological symptoms, cognitive impairment, and something that has been called "brain fog."

BRF believes that understanding the impact of this phenomenon on brain functioning in children and adults is essential, because of the skyrocketing rates of Blastocystis infection in the US that have occurred in the last 15 years.

Despite the size of the problem, there is not one lab in the US funded to address the infection, so doctors have no idea how to reliably diagnose or treat the infection. Nobody knows what drugs to use against the disease - most of the ones that have been tried by physicians now fail to eradicate the infection in most patients. And both the NIH and CDC have ignored repeated requests from US patients to change course, and provide funding to labs to address the problem. So in summary, the disease has been introduced into the US, it has been allowed to spread, and federal officials who control the country's infectious disease infrastructure have chosen to do nothing about it.

As far as we know, no affluent industrialized country has existed with 10-20% of its population infected with parasitic diseases. This amounts to a huge, uncontrolled experiment on the US population. In the study we published last year on Oregon residents (Parasitology Research, ), we found that diarrhea and abdominal pain were some of the most common symptoms. But once I started meeting with the families, something else came out. Every family that had children reported the development of learning disabilities in their kids after the gastrointestinal symptoms started, or at around the same time. Although the study was small - we only talked to four families with children - the appearance of learning disabilities in conjunction with prior reports of cognitive impairment in adults is of interest.

The most extreme case was a 12-year old boy diagnosed with pervasive developmental disorder. He had ongoing gastrointestinal problems, and had apparently never had a stool test. His doctor treated him for a week with metronidazole, and his mother indicated during that time his behavior improved, and he stopped trying to injure himself and others. Unfortunately, the drug did not eradicate the infection and his behavior returned to normal afterward.

In the three other families, the children were diagnosed with ADHD or possible autism spectrum disorder.

Chronic Infections Make You Stupid

The link between intestinal parasitic infections and cognitive ability was first shown in Giardia infection. Giardia, like Blastocystis, is an infection that was ignored for many years in the United States because it was found in many people who did not have diarrhea. Researchers eventually figured out that the disease would cause diarrhea in some patients, but not others, and modern researchers have suggested certain genetic traits in patients control whether they develop diarrhea or not.

But a second finding emerged from those studies. Children with Giardia infection scored lower on IQ tests and had lower standardized test scores, even if Giardia didn't produce diarrhea in those individuals. It's long been known that infections make some people sick, and produce a "carrier" state in others who spread the disease without showing symptoms. Typhoid Mary is the most famous case. But this was the first time researchers showed that the carrier state in a parasitic infection was associated with mental impairment.

Researchers Identify Neurological Mechanism

Blastocystis was relatively uncommon in the United States until the mid-1990's. But researchers overseas have more experience with it. In Egypt, Dr. Sannaa Kamal, a NIH-funded gastroenteritis at Ain Shams University, calls Blastocystis the disease with "an unusual clinical presentation." Patients complain about severe pain, widespread pain, and other symptoms even while their gastrointestinal symptoms may not be too severe. Because of this, many US physicians have insisted that such patients has a psychiatric disorder, and should be diagnosed with IBS. It turns out that IBS patients are a great place to start in studying Blastocystis - most recent studies indicate the organism can be found in over 50% of IBS patients using simple laboratory methods, while it is usually present in 5-12% of healthy individuals.

But the idea that IBS represents diarrhea caused by a psychiatric illness has come under attack by research groups in three countries. The researchers took biopsies from IBS patients, implanted them in mice, and showed that the mice developed neurological symptoms similar to those in the original patients. These included abdominal contractions and widespread pain.

With some additional works, researchers found that the cell biopsies were producing a chemical called trypsin. Trypsin is usually thought of as a chemical produced by the pancreas that breaks down proteins, but researches have recently found that many cells in the human body can produce trypsin, and it plays a role in immunological responses. At high levels, trypsin is able to hyper-sensitize nerve cells. The researchers used nerve cells cultured in a lab to show that the levels of trypsin concentration attained in IBS patients are sufficient to cause this type of hypersensitivity. The results were reported in the Journal of Clinical Investigation, with similar studies reported in Gut Magazine and the American Journal of Gastroenterology. In all, researchers in the United States, Canada, France, and Hungary have reported similar findings using IBS patients from Canada, Hungary, and France.

Adult IBS patients may be seeing a type of cognitive impairment as well. They report a reduction in productivity of 30% in association with the disease.

Nothing Too New
The idea that a long-term parasitic infection can cause psychiatric and neurological impairment may seem outlandish to US physicians today, many of whom graduated medical school after E. histolytica had been wiped out in the US. But medical papers from United States experts in the 1970's and 1980's describe a condition known as "amoebic neurosis" that was seen in many patients infected with the disease. The condition cleared once the infection was treated. Amoebic neurosis was also described in World War II veterans who had served in the Middle East. In New Zealand, many cases were missed by physicians, and veterans eventually went on medical disability. Doctors with the public health service recognized the problem, and began locating the patients, treating them, and removing them from the disability roles.

Are We Importing Poverty with this Disease

In the United States today, parasitic infections like Blastocystis are disregarded by the CDC and NIH. Patients are expected to self-manage symptoms with whatever they can find. But if a parasitic disease like this can cause cognitive impairment, as many studies have suggested, then this policy may prove to be a disaster. For most of the last 30 years, the United States has had a very low rate of parasitic infection in its residents. In the 1980's, less than 3% of individuals would test positive for an infection like Giardia, E. histolytica, or Blastocystis. Nationally, less than 7 million people in the US may have been infected in the 1980's. Today, infection rates of 10-20% are common, giving a national infection rate of 30-60 million. The rate can keep climbing - in Mexico, about 50% of the population is infected.

The reason is not clear, but it may be the case that doctors in the 1950's and 1960's simply misdiagnosed Blastocystis patients as having E. histolytica, or that patients would often acquire E. histolytica and Blastocystis together. Doctors treated aggressively with antiprotozoals that are no longer available. That ended in the 1980's with the development of more reliable tests for E. histolytica, and with popularization of the idea of "irritable bowel syndrome" as a type of diarrhea that shouldn't be treated with antibiotics.

During the time the US had a low rate of infection, our economy underwent substantial economic growth, much of it fueled by innovation. But all that could change as we see diseases like Blastocystis spread. In individual cases, it is certainly possible to see the cognitive impairment. But this also means that as we import parasitic diseases like Blastocystis, we are importing poverty and social problems from those countries.

Blastocystis occurs at high rates in some of the world's nastiest places, which have failed to make much economic progress despite decades of trying. Those areas include the Middle East, Mexico, and impoverished areas of South America. In the United States, in Oregon, the Blastocystis infection rate is now about 10%, which is comparable to the infection rate measured in an urban slum in Karachi, Pakistan. For comparison, many of the Asian countries with booming economies (Singapore, Korea, Taiwan, China) have Blastocysts infection rates of less than 3%.

This wouldn't be the first time that an environmental change had been linked to improvements in cognitive ability. Many researchers believe that lowered crime rates in the 1980's and 1990's were related to stricter regulations that removed lead from gasoline and pain. As we watch Blastocystis spread, with no help from the CDC or NIH to control it, we may see all of those gains eroded. And the US may begin looking more like Mexico, the Middle East, or an urban slum in Karachi.

This is the only sure cure for Blastocystis

2010-07-13T14:52:00.001-07:00

July 13, 2010. The rate of Blastocystis infection has skyrocketed in the United States in the last 15 years. What was once a rare disease now infects at least 1 in 7 adults in Oregon and California. Patients develop chronic diarrhea, abdominal pain, and severe fatigue. Some develop neurological problems, joint pain, and skin rashes. Many aren't able to work or function in society.

And sadly, many take their own lives. Patients with symptoms of Blastocystis infection are three times more likely to contemplate suicide or commit suicidal acts.

Patients don't want to kill themselves. They want a cure. But the NIH has repeatedly refused to support any investigation into drugs to treat the infection. They claim that it is too early to think about treating patients, and more research is needed. This, despite the fact that a 15-year study conducted between 1979 and 1994 in their own NIH labs conclusively identified Blastocystis as producing the same symptoms patients today are experiencing.

Many of the drugs which could treat patients today were used routinely by physicians until the mid-1980's, and then removed from use by the FDA except for a few specific cases defined by the CDC. If the NIH refuses to provide any assistance identifying drugs, that patients should have access to restricted antiprotozoals to try to find a treatment for themselves.

Is there a risk? Yes, of course. But many elective surgeries carry risks too, and they have not been banned. Patients can elect to have breast augmentation, nose restructuring, face lifts. People can choose to smoke, which has been proven to lead to cancer and death in many patients. In Oregon, a patient can even elect to end their lift.

But they can't elect to be treated with many antiprotozoal drugs for Blastocystis.

It's wrong for Federal agencies to drive patients to suicide when drugs are available which may help them. If you agree, please join us to promote patient choice in antiprotozoal treatment.

Because we'd like the disease to end with a healthy patient. Not a suicide.

Gulf War Illness: Going on 20 years

2010-07-13T13:42:00.000-07:00

July 13, 2010. Next year, we will mark the 20th anniversary of the Persian Gulf War. And researchers still can't tell us why the veterans are sick.

Many Federal agencies are able to conduct investigations in less than a year. A few examples include the Department of Transportation, which has been investigating sudden acceleration in Toytotas. NASA investigated the failure of the space shuttle Columbia in less than a year. Other investigations have included contaminants in milk and drywall imported from China. The Federal Bureau of Investigation investigates things all the time, and they don't need decades to do it. Those investigations mentioned were organized by Federal employees, often performed in Federal labs which were designed for that purpose. Those groups have skilled workers who are able to take measurements, analyze data, and come to a conclusion.

If the Department of Transportation wanted to spend two decades on the Toytota sudden acceleration problem, instead of investigating it with a skilled team, they would announce the availability of $10 million/year to any researchers who wanted to find out what was going on. University Professors studying black holes, atmospheric electromagnetic discharges, quantum physics, and other phenomenon would apply. Of course, each professor would conclude that their particular area of study was causing the sudden acceleration, and that many more years, and millions of dollars would be needed to develop the idea.

This is what happened with Gulf War Illness. When the veterans got sick in the 1990's, the Federal Government was busy shutting down all its labs so they could concentrate on HIV/AIDS research. Today, the division of the NIH that studies infectious diseases is essentially an AIDS lab. We have virtually no research capacity to investigate diseases other than the AIDS virus. Great news for HIV patients. Terrible news for the rest of the country.

Gulf War Syndrome has been a cash cow for US professors, injecting almost a half billion dollars into Universities which probably would not have been supplied by anyone else. But professors are not investigators. You can tell from the word. A professor is someone who professes. They keep claiming that something is true. They don't investigate. That's why we will never get a straight answer about the real cause from our US effort, and why the veterans are still sick 20 years later.

Fortunately, this phenomenon is found primarily in the United States. Many other countries have identified their own populations with symptoms of "Gulf War Illness." The ones in the Middle East, and now Asia and Europe are identifying specific gastrointestinal infections in those cases, despite counter-claims from a small number of US "experts" that they are wasting their time. Both Blastocystis and Dientamoeba fragilis are being tagged as the culprits, and the research has been repeated enough times in enough countries that researchers are becoming more aggressive about ignoring US "experts." So we already have answers, and possible treatments for this disease. But will we listen?

Why can't the CDC act more like other Federal agencies?

2010-07-13T11:04:00.000-07:00

July 13, 2010. This week, the Wall Street Journal published a story on an investigation made by the US Department of Transportation into car crashes where owners claimed that a malfunction in their Toyota's electrical system was at fault. In the study, analysis of the data recorders from the cars showed that the brake pedal had not been depressed, and the accelerator pedal was fully depressed. This finding contradicts the conclusion that had been reported earlier in the press, mainly that the sudden acceleration crashes were caused by a defect in the Toyota's control system. Rather, it supports a study published in 1989 by the DOT which found that most sudden acceleration crashes were caused by motorists who confused the brake and accelerator pedals.

What's remarkable is that the DOT was able to conduct an investigation into a public safety issue, collect data, and publish a finding in a matter of months. In contrast, patients who have been infected with Blastocystis are still waiting for the Center for Disease Control to make up its mind about whether that organism can cause illness.

Patients have been waiting a long time. The first major clinical reports of Blastocystis causing illness in the United States appeared in the late 1980's and early 1990's. An systematic analysis of research studies from that time period showed that the majority of scientists supported the viewpoint that Blastocystis was causing disease. However, a small number of physicians argued that patients with Blastocystis should be diagnosed with irritable bowel syndrome, which was considered a psychiatric disorder, and that they should not be treated. Yes, patients who got sick in the early 1990's are still sick. In our 2007 study in Oregon, we identified many patients who had been sick with Blastocystis for 3, 5, and even 15 years. Doctors can't treat them without information about which drugs to use, and that information can't be obtained until a decision is made about whether Blastocystis is causing the illness.

The ability to determine whether an organism is causing disease in humans is possibly the most basic role that a federal infectious disease organization can fulfill. There are a multitude of ways to make such a determination, including animal studies, human treatment studies, and other laboratory studies. As in the Department of Transportation investigation, all of these involve employing skilled individuals to work in a laboratory setting, collect data on a number of cases, analyze it, come to a conclusion, and report that result. NASA investigated the Challenger accident, for example, and came to a conclusion in less than a year.Virtually all other Federal technically oriented organizations perform this task, but this process seems to elude the CDC.

Two decades after the original US reports, the best we have from the Center for Disease Control is that "experts disagree." The question is not trivial. In 1989, Blastocystis was appearing in about 2-3% of stool samples submitted to labs in the United States, which meant there were about 6 million cases in the US. Today, Blastocystis is commonly found in 10-20% of lab samples, which means that in the last 20 years, we've added about 39 million new cases of the disease or about 2 million new cases per year. In that time, the CDC has simply said they won't act unless someone else makes the decision and does research. The NIH has refused to support any clinical work until someone else makes the decision. So US physicians do not have reliable diagnostic tools, treatments, or guidelines.

It is always amazing to me that a physician is expected to make a decision about what is causing a patient's illness in about 10 minutes, while the CDC does not see anything wrong with taking 20 years to perform the same task. Without any scientific effort into the disease, a medical opinion from a US physician is as valuable as one from a doctor in the Middle Ages.

FDA Can Make Decisions, Why Not the CDC?

Other agencies in charge of medical issues are able to make decisions too. This month, the New York Times reported that the FDA had reviewed trials performed by drug maker GlaxoSmithKline on the popular diabetes drug Avandia, and found mistakes in the methodology that lead to the underestimation of heart problems. In this case, the article mentioned FDA medial reviewers - people with degrees who read papers and develop policy statements. The CDC apparently lacks any such individuals. The FDA also brings together panels to review potential safety issues, especially those that effect a large number of patients. According to the article, the FDA's method has a great deal more transparency. It involves assembling a panel, having them vote, and disclosing the results. The CDC simply states that shadowy "experts" disagree, so nothing will be done. Who are the experts? Do they have a financial or professional interest that would cloud their judgment? Are they even experts in parasitology? Maybe they are experts in some unrelated field, like botany. Overall, most of the CDC's efforts to date appear to involve identifying studies that would suggest they haven't been evading their professional responsibility for the last 15 years.

What's the impact of infecting so many people with Blastocystis in the last 15 years? Those 39 million 39 million cases haven't gone unnoticed. If you turn on your TV and see an ad for "Activia" or "Zelnorm", new products to treat IBS, that's one major sign. The US has become a Syndrome factory, coining new words to describe the symptoms of this population (irritable bowel syndrome, leaky gut syndrome, chronic fatigue syndrome, multiple food allergy syndrome, Gulf War Syndrome, etc.) All of these have been popularized in the last 20 years - ever wonder why?

Is it hard to research Blastocsytis? Research scientists in a dozen countries (see related blog entry, Global Research Roundup - Spring 2010) are performing Blastocystis experiments and publishing the results daily. Although we still don't know how to treat the infection, there is no shortage of papers on Blastocystis. The NIH's PubMed database suggests that sometime this year, we will pass the 1000 mark on the number of published Blastocystis papers, and almost all of those papers which investigated pathogenicity found Blastocystis would make humans sick.

Is it expensive to research Blastocystis? Do agencies need more money? Many research studies on Blastocsytis are being performed in countries like Malaysia, Egypt, Philippines, Greece, Turkey. The average annual income in those countries is often half what it is in the US. The budget of the CDC and NIH exceeds the total medical expenditures in some of those countries. Money has nothing to do with it, and giving agencies more money will not help.

For years, the CDC has hid behind the statement "experts disagree." Agencies like the Department of Transportation show us that it is possible to use science to investigate public health and safety issues. And that we can make decisions based on the results from scientific investigation. And the investigations do not require new Congressional funding. Yes, experts do disagree about what was happening with Toyota cars. Experts disagree about a lot of things. They disagreed about the causes of the Challenger disaster. They disagreed about whether nicotine was addictive. Nobel Prize Winner Peter Duesberg (www.duesberg.com) claims that that HIV does not cause AIDS. A good lawyer can find you an expert who will disagree with anything. Do we want Federal agencies that enter a state of paralysis in the presence of any disagreement.

Using science to make medical decisions is always unpopular with some physicians. BRF has proposed Federal legislation that will legally compel the CDC to take positive action to identify which organisms are causing disease, and how serious the problem is. This is a win-win situation. According to the CDC's mission statement, the agency's job is to "protect [our] health" by monitoring health, detecting and investigating health problems, developing and advocating sound public health policies, and providing leadership."

The Patient Protect Act will promote that role without breaking the bank. It requires the CDC to investigate studies cataloged in the NIH's Pubmed database. In laymen's terms, it requires the CDC to RTFB (Read the F--- Book) and write down what they find. They will have to do this at least once a year, and they will have to write down the majority opinion based on the most recent published research. They can't cherry pick older studies to support a minority viewpoint. It's essential that we have a system for translating science into practice. That's what is missing in Blastocystis. A search on the NIH's Pubmed shows we've already got close to a 1000 research papers on Blastocsytis cataloged in their database. And virtually every paper published in the last 15 years has confirmed the original finding of an NIH lab published in 1993, mainly Blastocystis makes people sick. Very sick.

The Patient Protect Act will give US citizens a CDC which lives up to its promise. CDC doctors will still be able to play golf with their buddies in industry, without having to worry about making decisions like, "Should I disclose what researchers are publishing?" The answer will be Yes. It's the law. By taking the decision making process out of the equation, and developing a compulsory role for the CDC in reviewing infectious disease literature, we can help ensure that conflicts of interest or staffing limitations do not encourage the CDC to selectively ignore major infectious diseases in the US. It also gives the NIH a blueprint for which infectious diseases it needs to concentrate on, and which areas need work in those infectious diseases.

The CDC already does much of this, there is no requirement that the CDC update summaries yearly, or that the information presented in the summaries reflect the majority scientific opinion of scientists world-wide. Because of this, it is possible for the CDC to make it appear that scientists are equally divided on an issue when the studies overwhelmingly support one side.

Many other agencies have legal obligations, and some can even be sued if citizens groups argue they are not living up to them. Public agencies have sued the EPA for failing to enforce PVC power plant emissions. But to date, almost all legislation in the public health area relative to infectious disease has involved regulating business. None of it defines any obligation of the Federal government to identify or react to an infectious disease. Because of that, infectious diseases can spread for decades in the United States without anyone's knowledge. I'm sure that nobody at the CDC wants that to happen, and I certainly don't. The Patient Protection Act will be one of the first public health laws that defines an obligation of the Federal government to respond to scientific literature concerning changes in infectious disease.

It's not unusual for a federal agency to act in the interests of a business segment, at the expense of the rest of the population. But this isn't a question about a higher price for a product, or a tax break for an industry. But this disease is wrecking the lives of countless families across the United States, and we need to drive accountability and responsiveness at the CDC to stop the epidemic.

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1. Ramsey M, Linebaugh K. U.S. Study Raises Questions in Toyota Crashes. Wall Street Journal, July 13, 2010.

2. Harris G. Caustic Government Report Deals Blow to Diabetes Drug. New York Times, July 9, 2010.

3. CDC Mission Statement, http://www.cdc.gov/about/organization/mission.htm

Are You Eating Poop?

2010-07-11T09:45:00.001-07:00

July 13, 2010. Blastocystis has become a problem in the United States recently. And even then, it is more common in some states than others. Before 1989, there were relatively few clinical reports of the infection, and labs only found the organism in 2-3% of stool samples. But in the early 1990's, Blastocystis took off in many states- especially in the West.

What happened?

There are a few possible explanations. A new type of Blastocystis may have emerged, and received world-wide distribution. Trends in immigration change, and move diseases into new countries. Doctors starting being more conservative about who they treated with antiprotozoal drugs.

But water usage may also have a lot to do with Blastocystis' spread. In order to contract Blastocystis infection, you have to eat something contaminated with feces from an infected person. It doesn't spread like colds through casual contact. And it doesn't live freely on surfaces like staph infection.

Contaminated water has repeatedly been identified as the culprit in Blastocystis infection, and in similar diseases. Although we usually hear about viruses like SARS being the boogie man, protozoal infections like Blastocystis are the king of infecting a large number of people in a short time. In the 1990's, a single case of water contamination in a municipal water supply in Milwaukee infected 270,000 people. There aren't many diseases that can go from 0 to 270,000 in one day.

Geography 101

At BRF, we've compiled a map to show where people are researching Blastocystis. Although Asia has hosted a number of top notch labs for years, most of the clinical studies have come from the Middle East. In the United States, California, Oregon, Florida and Texas are all areas with high rates of infection. Internationally we also get many reports from Australia.

What do the Middle East, Western US, and Australia have in common? Water problems. The problem has become so pronounced in Australia and the Middle East that communities are setting up desalinization plants to provide water.

But it's not those plants causing the problem. Rather, water recycling efforts are more common in areas where there is little rainfall. To the uninitiated, water recycling means using treated sewage for everything from watering lawns and crops to drinking water.

Yes, some have proposed running the sewage directly into the drinking water supply:

"Opponents of desalination say that a cheaper and environmentally friendlier alternative is recycling wastewater, though persuading people to drink it remains difficult and politically delicate. The SEQ Water Grid Manager, for instance, retreated from its initial plan to introduce recycled wastewater into its drinking reservoirs after it began raining.

“There’s a stigma against recycled water,” said David Mason, 40, a resident of Tugun."

-New York Times, July 11, 2010

Fixing What's Broke

In the past, when a large number of people developed gastrointestinal illness, researchers would look to the water supply as a source. That's how we discovered that Cryptosporidium was a human pathogen. Over 270,000 people in Milwaukee helped.

But in the last 10 years, we've lost most of the scientists who studied protozoal illnesses in developed countries. They've been replaced by people with considerably less scientific expertise. The result is, experiments in recycling water are probably making people sick, but the medical community just tells them they have irritable bowel syndrome.

How we get our water is an important topic, and not one which I have much experience with. Maybe we should drink treated sewage. In Oregon, cities dump their sewage into the Willamette River, and that's where the drinking water comes from, as well as irrigation water. So we are drinking treated sewage, and we're using it on crops too.

But what we DO know is that a large number of people have gotten permanently sick with Blastocystis infection in the last 10 years. And the NIH has repeatedly refused requests and petitions from citizens, as well as Congress to address the infection. The result is that physicians in the US have no reliable information about the infection here, and we don't know how to diagnose or treat it. We need to clean up the IBS cases. We need to get these people properly diagnosed and treated.

1. http://www.nytimes.com/2010/07/11/world/asia/11water.html?hpw

Who stole the NIH?

2010-07-06T14:39:00.000-07:00

July 1, 2010. Today, the National Institutes of Health (NIH) announced a new standard by which its research projects will be judged. Called the "STAR Metrics", NIH Director Francis S. Collins, M.D., Ph.D., commented:

"STAR METRICS will yield a rigorous, transparent review of how our science investments are performing. In the short term, we'll know the impact on jobs. In the long term, we'll be able to measure patents, publications, citations, and business start-ups."

The remarkable thing about the announcement? It completely omits any mention of patient health. Yes, the NIH's sole purpose is now to produce patents, publications, and business start-ups.

Part of a Trend

The STAR metrics announcement was not news to BRF. In our discussions with US researchers, most of whom are professors at US universities, we've noticed that pursuing research that improves the health of US citizens is no longer a topic of interest. The focus of virtually all US research today is generation of capital for the hosting University.

The significance of the NIH's announcement can not be underestimated. In the last 15 years, grant expenditures at the NIH have tripled in size, from about $10 billion in 1995 to $28 billion in 2008. No critical Federal agency has experienced this type of growth so quickly. However, this growth has largely gone unscrutinized. Who can complain about spending more money on health? But the devil is in the details - because of the way the money is spent, US researchers are actually devoting much less attention to research that will ultimately improve the health of US citizens. In many critical areas, especially emerging infectious diseases, research has been abandoned completely, leaving patients and doctors to fend for themselves.

Regulatory Capture

The reason is an obscure phenomenon known as Regulatory Capture. It's the phenomenon that has given us the last several financial meltdowns, and the BP oil well disaster in the Gulf, and now its wrecking our health too. Regulatory Capture happens when a government entity steps in to regulate or influence an area of the economy. Once that happens, special interests groups have an incentive to concentrate their influence to ensure that the regulation is favorable to their group. This means that groups that regulate finances will be subject to influence from financial institutions. In the case of BP, the Federal agency that regulated offshore drilling was also responsible for being a kind of chamber of commerce for oil companies.

Regulatory capture is the process in which a special interest group gains control of a government function to further its own interests. Richard Posner, an economist and lawyer at the University of Chicago, said that, "Regulation is not about the public interest at all, but is a process, by which interest groups seek to promote their private interest ... Over time, regulatory agencies come to be dominated by the industries regulated."

Regulatory Capture is nothing new. In the late 1800's, the Federal Government created the Interstate Commerce Commission, and the railroad corporations quickly took over its operations to discourage competition and increase their profits. Richard Olney, the US attorney General at the time, commented, "The Commission is, or can be made, of great use to the railroads. It satisfies the popular clamor for a government supervision of the railroads, while at the same time that supervision is almost entirely nominal."

While the NIH may conjure up images of elite government laboratories in Bethesda, MD, the reality is much different today. Most of those labs have been shut down, or are a shadow of what they once were. Today, the NIH is mostly a bureaucracy which distributed money to about 50,000 researchers in the United States, almost all of whom are professors at US Universities. And who determines how that money is distributed? The University professors themselves!

The NIH is unique, in that it is the only critical government agency that manages a $28 billion dollar grant budget by allowing the people who receive the money to determine how it is spent. Because of this, it's functions largely as a trade union for US researchers, ensuring they receive as much money as possible, rather than as an advocate for US patients.

The influence of researchers on the NIH's goals is unmistakable. Corporations and public agencies will often judge their progress by what they provide to customers. For example, the FAA may examine how often flights are on time, or the rate of plane crashes. Automobile companies may measure customer satisfaction and sales rates. But every document the NIH publishes that describes "progress" talks about issues which have utterly no relevance to the US patient.

Here are just a few examples:

1. A 2006 report by NIH Directory Elias Zerhouni, entitled "NIH at the Crossroads" measured the NIH's. Can you imagine a private company measuring its progress by how much money it hands out?

2. A 2007 report from the NIH measures progress by the percentage of women receiving NIH grants.

Why are these things irrelevant to the public? Suppose the body of US medical researchers decided to begin studying Origami, and abandon all research into human disease. Then suppose they all submitted grant requests to the NIH to study Origami, and all were approved. By the NIH's metric, they would be doing a perfect job.

Researchers are unlikely to pick Origami, but any head of a technical organization will tell you that when technical people are given free reign, the inevitably pick goals which have no value to customers. If the Department of Transportation behaved like the NIH, we would get all the race car drivers together, give them $20 billion, and let them figure out how to spend it. We would get cars that go 200 miles per hour, that nobody could afford. We'd get race tracks in every town. We wouldn't get boring things, like seat belts, air bags, or traffic lights. That's what the NIH has engineered in the United States for our medical system. Sexy projects that make scientists drool. Projects that get you published in prestigious journals. Papers that end with the sentence, "and this could possibly improve health of patients, if anybody wants to bother trying to do that."

University Incorporated

Congress had a hand in creating this mess when it passed the Bayh-Dole act in 1980, which allowed US universities to own patents, just like businesses did. Over the last 30 years, this act has helped transform Universities from public institutions to non-taxable corporations. The NIH's announcement of the STAR metrics today completes that transformation.

Before 1980, many US researchers declined to patent important discoveries that were made with public money. Dr. Jonas Salk may be the best example. When asked if he would patent his vaccine for polio, he replied, "Would you patent the sun?"

By the NIH's new STAR standards, Dr. Salk's work would be a failure. First, he did not produce a patient. Second, his work did not produce jobs. In fact, many people lost their jobs because of Salk's vaccine. Companies that made iron lung machines went out of business. Centers that used to care for people crippled by polio were no longer needed. Finally, it isn't clear that the Salk vaccine generated many publications or references.

At BRF, we've seen the NIH's new system at work firsthand. Last year, I was talking with a researcher who was employed at a State university, paid by our tax dollars. He was working on a project to understand what microbes are found in patients with a type of chronic gastrointestinal illness called inflammatory bowel disease (IBD). BRF had previously worked with the US Air Force and Oregon State University on a similar project, and we had used many of the same methods he was going to use in his project to show that these patients have an infectious disease which could possibly be treated and cured. IBD is now considered an auto-immune disease, meaning that doctors believe it is caused by the body attacking itself, and there is no sure. I suggested that adding an additional analysis step to his study would allow him to screen his IBD patients for Blastocystis infection. We even offered to cover the additional cost of adding the step, and to provide the analytical reagents developed at the USAF for free.

The conversation was going cordially, until I suggested that these patients could be treated, and permanently cured of the disease. Suddenly, the tone in the room changed considerably. I was no longer a collaborator - I was a competitor. You see, the researcher had signed an agreement with a private company to develop a supplement for IBD patients. One of those pills you see advertised in alternative health magazines. Supplements are highly profitable because they do not have to undergo testing to meet any FDA guidelines, which can cost millions of dollars, and carries the risk that the supplement could be found to be useless. They are available without a prescription, so you don't have to convince doctors they are worthwhile either. And you can patient them.

In an earlier story (Researchers Cash in on Syndromes), we provided a few other examples of the way patents are influencing research. In the 1990's, researchers found that Blastocystis infection was treatable with a drug called Rifaximin. If a researcher discovers an infectious disease is causing an illness, and it can be cured with an antibiotic, that discovery is not patentable. The antibiotic may be covered under patent protection by the manufacturer, but the discovery that the disease was an infection, and can be cured with the antibiotic is not patentable.

Here's the loophole. If you invent a disorder, and say that the antibiotic is treating the disorder and not the infection, then you can patent the use of the antibiotic in those patients. That's what the University of California did. In the United States, most patients with Blastocystis infection are diagnosed with irritable bowel syndrome (IBS). The University of California stated that IBS patients are sick not because they have Blastocystis infection, but because they have too much bacteria in their intestines. I am not making this up. They call it Small Intestinal Bacterial Overgrowth (SIBO). They published some papers on this, and then obtained a US patent ( ) for treating those patients with Rifaximin. The estimated value of the patient is over $1 billion, according to an article by Investor's Business Daily.

A course of Rifaximin already costs over $200. What this means is that IBS patients will also have to pay a royalty to the University of California when they are treated with the drug. Not just US patients - those in Pakistan, Turkey, China, etc. This is true even though researchers in those countries have been publishing papers for years that state the US idea of "irritable bowel syndrome" is a crock, and these patients really have an infectious disease that needs treating.

Fun and Games at Your Expense

But patents aren't the only way that US taxpayers are being fleeced. This year, President Obama announced that the NIH would get a windfall "recovery stimulus" payment of $10 billion to handout to US universities to promote health research. But most of that money evaporated before it hit the ground, due to a little know practice at Universities called "Indirect Cost Recovery."

Here's how it works. When the NIH announces that it has given $100 million to study something, say Gulf War Illness, the researchers doing the study really aren't getting $100 million. The University where they work steps in and takes a cut, indicating that it needs the money to pay for things like electricity, staff, etc. It's like a tax on research. The actual percentage is called the "Overhead Rate." Universities always want more money, and they started figuring out they could raise more capital by increasing the overhead rate. It's not uncommon for the University to pocket 50% or even 75% of the NIH's money. At many medical schools, NIH overhead fees now provide the majority of their operating capital.

Where does it go? A recent study found that US Universities are indeed very expensive to operate, but that more money is now going toward "entertainment" than instruction. An investigation of Stanford University found that the University was charging the NIH for everything from the use of yacht to cut flowers. Stanford's overhead rate was almost 75% at the time.

Where has the Gulf War Illness research money been going? The main recipient of this funding has been the University of Texas. BRF obtained documents showing their overhead rate exceeds 50%.

Downside for US Patients

Government waste is frustrating, but nothing new. And perhaps spending money on Stanford University's cut flowers is better than building new intercontinental ballistic missiles. But the damage the new NIH is doing isn't related to wasting money. Its due to the redirection of talent.

At BRF, we have maintained since our inception, that if doctors have reliable diagnostics and treatments for Blastocystis, the problems of 'irritable bowel syndrome' and 'inflammatory bowel disease' will be substantially reduced, or possibly even disappear. We initially thought that the main issue would be convincing US researchers that Blastocystis was playing such a major role in disease in the US. But that hasn't been the case. Admittedly, we've been helped by an enormous number of publications from Asia, Europe, and the Middle East over the last several years that have supported what we began saying in 2006.

What is the sticking point? US researchers just don't care about helping this patient group. Yes, they could be cured, but curing them isn't part of my University's mission, which as the NIH states, is now producing high-performance scientific investments.

"STAR METRICS will yield a rigorous, transparent review of how our science investments are performing. In the short term, we'll know the impact on jobs. In the long term, we'll be able to measure patents, publications, citations, and business start-ups."

The NIH is stolen. And we want it back.

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References:

1. NATIONAL INSTITUTES OF HEALTH FUNDING MECHANISMS, and details
http://officeofbudget.od.nih.gov/pdfs/FY09/Mechanism%20Detail%20by%20IC,%20FY%201983%20-%202008.pdf

2. Women supported by NIH grants, http://report.nih.gov/WRTAS/WRTAS.pdf

3. Universities own intellectual property: http://www.ftb.com.hr/39-157.pdf

4. NIH at the crossroads http://grants.nih.gov/grants/peer/prac/prac.../zerhouni_crossroads.ppt

5. Patent

6. Share of college spending for entertainment rising
http://www.nytimes.com/2010/07/10/education/10education.html?hpw

7. Stanford Investigation

8. University of Texas overhead rate documents

How To Tell When Blastocystis Comes To Town: Gluten Free Bakeries and Other Signs

2010-07-06T12:56:00.000-07:00

July 13, 2010. Blastocystis is a single-celled protozoan-like organism that is transmitted through contaminated food and water. Most adults, and many children who are infected with Blastocystis will experience abdominal pain, diarrhea and fatigue. Other symptoms frequently mentioned are skin rashes, joint pain, and neurological problems.

When taken together with other microbes like the HIV virus, E. coli, and West Nile, Blastocystis is one of many diseases which really didn't exist to a significant degree in the US until the 1980's. Since then, Blastocystis has emerged to become the most prevalent protozoal infection in the country - in California in 2000, almost 1 in 4 stool samples submitted to one labs contained Blastocystis. It is important because (unlike West Nile and E. coli), the infection doesn't go away in most patients on its own. And US doctors have been given no guidance, reliable diagnostics, or reliable treatments for the infection. The NIH has opposed earmarking any money for clinical work in Blastocystis, despite multiple requests from Congress. Likewise, the CDC has refused to take any action despite requests from Congress as well.

The result? The infection moves into towns, makes everyone sick, and there is no response by the medical community or the public health system. So far, Blastocystis rates have been highest in California, Oregon, Ohio, Florida, New York State, and some other states. Because there is no cure over the long term, rates will increase.

How can you tell if Blastocystis has gotten to your town yet? BRF has worked to organize studies to screen people, but this is surprisingly difficult. Even a small screening study can cost $5000-$10,000 and that's twice BRF's annual budget. BRF has asked for help from the CDC and NIH, and both organizations have refused to take any action.

But there are other ways to find out when Blastocystis has come to your town. As one can expect, when 10-30% of a town is infected with something, this will change the way people behave. Here are a few things to look for:

(1) There is a 3-month waiting list to see a Gastroenterologist.

(2) A large number of alternative health practitioners (AHPs) setup shop to treat patients with nebulous diseases (irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia). A study found that a large number of patients who see AHP's are infected with diseases that have emerged in the last 15 years (Blastocystis and D. fragilis), and that the medical community is generally ignoring.

(3) The toilet in the men's room is often splattered with blood.

(4) Your town has to expand its endoscopy/colonoscopy center, even though there was no increase in the town's population.

(5) It becomes necessary for schools and businesses to accommodate elaborate exclusion diets, which will usually include gluten, corn, sugar, artificial sweeteners, ice cream and chocolate. alf the families you meet will have someone with "multiple food allergies" which have developed in the last 10 years. Kids (and parents) have long lists of food they can't eat and have to buy special foods at the grocery store.

(6) The special foods section at the grocery store gets very large. A gluten free bakery opens in town, or your supermarkets begin carrying lots of gluten free foods: Many Blastocystis patients are able to reduce the severity of their symptoms by avoiding gluten. This is not the same as Celiac's disease, which effects less than 1% of the population. Blastocystis patients will not test positive on Celiac tests; their intolerance to gluten begin once they are infected; and it ends if they are cured.

(7) Kids have to stay home sick much longer. Adults have to take more sick days for themselves.

(8) There is a 2-3 months waiting list to see a Dermatologist or Rheumatologist.

(9) The Psychiatrists in town stop accepting patients because their practices fill up. The suicide rate in town increases.

Is the NIH creating a new aristorcacy?

2010-07-06T10:26:00.000-07:00

This year, the Federal Government will spend $31,406 for every household in the United States, according to statistics reported by a Tampa, FL newspaper.

That's an extraordinary amount of money. Are we getting good value for this spending? President Obama gave the NIH a $10 billion gift this year, over and above it's usual amount, as a "recovery incentive." But is spending more money getting us better medical care?

The first thing to understand about NIH funding is that over half of it never goes to the researcher. It goes to the University that employs the researcher. This process is called "expense capture" and was originally meant to pay for the lights, electricity, and support services the researcher used. But over the years, schools have come to depend more and more on this money, to the point that they now try to recruit scientists who will submit large NIH grants, so they can tack on big overhead fees to fund the University's operations.

Often, that money goes to things that have nothing to do with medicine. Stanford University, which has one of the highest overhead rates in the US, was found to be using the money for everything from cut flowers to payments for a yacht. This is part of a trend in medicine and academia for the past 20 years in the US. Both tuition expenses and medical expenses have risen at 2-3 times the rate of inflation over that period, although there is little evidence this increased expenditure is associated with better service. Rather, the money is going into the pockets of a wealthy elite who have found that it's more profitable to pull strings than to cure diseases.

As an example of how little good this money does, the US now leads the world in the dollars spent on medical research. But since 2005, five individuals have received Nobel Prizes for identifying a microbe that was causing a disease. None were from the United States. Two won from Australia for finding the bacteria that causes stomach ulcers (Helicobacter pylori), two won from France for finding the HIV virus, and one won from Germany for showing that human papilloma virus caused cervical cancer. The fact is, any one of these studies could have been done in the US, but in most cases, the NIH refuses to find work like this.

Today, they are refusing to fund Blastocystis research, which scientists in over a dozen countries outside the US (as well as those inside the US) have insisted is causing long-term gastrointestinal illness. Patients get diarrhea, abdominal pain, and it doesn't stop. Not after a year. Not after 10 years. In the US, the NIH administration shut down all work on Blastocystis in the mid-1990's, after one of their own researchers published over a dozen papers identifying it as disease causing. In the years following that, the disease spread in the US, especially in states with high immigrant populations, like California, Oregon, Washington, Arizona, Florida, Texas, and New York.

Medical researchers enjoy a good reputation, but that maynot always be deserved. There are many cases where NIH-funded researchers have faked data to get ahead in the industry. Overall, researchers are people with self-interests, and these need to be managed. Expecting them to be angels and perpetually act in the public interest is not reasonable. In my experience, researchers are no more ethical than stock traders.

A common problem in Blastocystis patients is the inability to eat many types of food which are commonly found in the US diet. This includes bread, fruit, rice, corn, breakfast cereal, milk and many other foods. A typical diet from a Blastocystis patient may consist of chicken, fish, and gluten-free bread, and even with this, many patients have severe symptoms. This doesn't seem to engender much sympathy at the NIH. Their attitude appears to be, "Hey - we're curing cancer. Don't bother me with your stupid diarrheal diseases."

Interestingly, every developing country that has started a Blastocystis project has identified it as a problem, and developing countries are now providing most of the work in this disease. The research is coming from Mexico, the Philippines, Malaysia, China, Venezuela, and many other countries. The fact is, the average citizen in Oregon may have a lot more in common with people in those countries, than with the NIH officials. You see, about one third of Oregon is on food stamps. So most families can't afford to buy the special foods that patients have to eat when they contract this disease.

So on the one hand, you've got a disease which is worsening the problem of poverty in communities. But it's also raising up those who make more money than most of us. namely, medical specialists who provide care for people who have contracted diseases the NIH refuses to research. This disease could potentially be cured with a few weeks of antiprotozoals, if the NIH would permit the study to identify which drug should be used. But instead, patients wind up with chronic illness, and they often don't even know why. So they visit a different medical specialty for each symptom. Even if patients are tested for Blastocystis, some doctors will not inform them of a positive result. The State of New York has actually designed its pathology forms to avoid reporting Blastocystis in patients to the doctor. The CDC has refused a proposal from BRF to recommend that doctors inform their patients of positive results.

So the Blastocystis patient, with no knowledge of the infection, begins to make visits to the specialists. The skin rashes produce a visit to the dermatologist. The joint pain sends them to a rheumatologist. The gastronterologist visits go without saying. And many patients develop psychiatric illness, making the most expensive visits to the psychiatrist.

The average annual income for almost all of these specialties in the US is over $250,000. As such, you have a population that consists largely of people who can barely provide food for themselves, giving money to a small population of medical elite.

REFERENCES:

http://www.nytimes.com/2006/10/22/magazine/22sciencefraud.html

http://www.tampabay.com/opinion/columns/washington-will-spend-31406-per-household-this-year/1086283

http://www.saltinstitute.org/News-events-media/Salt-Sensibility/Health/NIH-funded-researcher-begins-jail-term

http://alison-bass.blogspot.com/2009/10/why-scientific-fraud-is-on-rise.html

http://smrb.od.nih.gov/HR6164-508.pdf

The Globalization of America

2010-06-23T15:22:00.001-07:00

July 14, 2010. We hear a lot today about how we are part of a global community. Whether it has to do with free trade legislation like NAFTA, immigration policies, or the internet, distant parts of the world have been brought a lot closer to towns and communities in the United States. Most of what Walmart sells now comes from China. At my job, it's common for us to work with engineers in the United Kingdom, Israel, and Singapore in one day.

The down-side of this is that diseases from overseas are brought a lot closer to us as well. West Nile virus, a disease named after a river in Africa, now shows up in Colorado. About 5% of the population of Key West Florida has been exposed to Dengue fever. And Blastocystis, a protozoal disease which was once uncommon in the United States, now infects 10-20% of the population in California and Oregon.

West Nile and Dengue are viral diseases which make some people very sick for a short time, then most people get better. These diseases can tax the medical system by sending lots of people to doctors are the same time, but most people who are infected with the diseases get better without treatment. But once someone is infected with Blastocystis, they will probably carry it for a lifetime if they aren't treated. Because of this, diseases like Blastocystis produce a high economic cost to communities and families. In the United States, patients with Blastocystis infection are usually told that they have IBS, food allergies, or an auto-immune disease.

A Federal Disease

In order for Blastocystis to become a problem, people in the US need to be exposed, and they need to stay sick for years without treatment. Federal policies today are ensuring this is happening. Here's how.

In analyzing Blastocystis infection trends in the United States, there is some evidence that the major source of the disease is immigration from Mexico. About 50% of the food handlers in Mexico are effected. The prevalence of the disease in US residents has risen in fallen based on the rate at which illegal immigrants are apprehended crossing the border. The states in the US that have the highest rate of infection are those that have the largest Mexican immigrant communities.

In some countries, immigrants are screened for infections like Blastocystis, and treated if they are infected. Both Taiwan and Singapore screen immigrants, many of whom come from Southeast Asia and carry a variety of diseases. Studies from those countries indicate that immigrants often go to work in the food service and medical care industries, and as such may expose a large number of residents to infection. In the United States, we don't screen immigrants, and we haven't done a good job of controlling immigration either. Employers, especially in the farming industry, insist they need migrant workers from Mexico because US citizens won't take the jobs.

So the first part of the equation is there: US citizens are being exposed to Blastocystis infection as a direct result of Federal immigration policies.

But what about the next part? Blastocystis is one of about a dozen protozoal diseases which humans can contract, and which will produce life-long symptoms without treatment. But scientists have been able to identify treatments for virtually every protozoal disease that can infect humans. The treatments are often very specific - in many cases, there is only one drug that will work.

The United States was well on its way to identifying a reliable treatment for Blastocystis in the mid-1990's. An NIH lab had performed a 15-year study that showed Blastocytis was making people sick in the US, and that the old drugs were not working. The lab had even started looking at alternative drugs, many of which were described in a 1993 review in the journal Clinical Microbiology Reviews by the NIH researcher, Dr. Charles Zierdt.

But then something happened. A small number of physicians in California working at Kaiser Permanente insisted that these patients should be diagnosed with "irritable bowel syndrome." That's another way of saying that they were insane and faking diarrhea to get attention from doctors. It's not clear why they were so insistent. One of the doctors had published a study in the 1980's that said Blastocystis was harmless, so he have been upset at the possibility of being contradicted by the NIH research. Kaiser is also an HMO, and the doctors may have been trying to save money by telling patients they had IBS, so they would not have to be treated.

Whatever the reason, the NIH shut down all research following these objections. Employees from the NIH began telling US researchers there was no proof Blastocystis caused illness, and they discouraged them from applying for grants. All Blastocystis grants that were submitted to the NIH from 1995 to 2010 have been rejected. There are over a dozen countries around the world with labs that are working to help patients, and not one of them is in the US.

So the second part of the equation was also met by the Federal government. First, we had a huge amount of unregulated immigration in the 1990's, and next, the Fed shut down all research into this disease, ensuring that US residents who became infected would never get diagnosed or treated.

This is Your Home Town On Globalization

Last year, one patient who had developed chronic diarrhea wrote to me, and said that her doctor told her to ignore the Blastocystis test results. "If you go to a developing country, you'll probably find half the people there are infected."

That's true. Blastocystis is common in impoverished communities. So is chronic illness. That's one reason why those communities are impoverished. Here's a map from an article in the journal Science, entitled, "Do Parasites Make You Dumber?" which describes research published at the University of Virgina and elsewhere that related the wealth of countries to the level of parasitism:

We can talk about Blastocystis bankrupting families at the individual level. About parents who can't care for children, who have spent their life savings and retirement money on useless treatments from alternative health care providers. We can talk about people in their 20's who have fatigue so severe they can't go to college.

Experimenting on US Citizens

Last year, researchers from Pakistan published a study on children in an urban slum in Karachi, and found that the rate of Blastocystis infection was around 10% - that's comparable to the infection rate in Oregon today. Corvallis, and many other towns in the US are now part of a big experiment. We've known for a long time that impoverished communities have high rates of chronic infections, and that when we provide medical care, the standard of living rises and those infections go away. But what is the cause and effect? Did the infections cause the poverty? Or were they the result of the poverty?

In the case of Blastocystis, we are infecting large numbers of US residents, and then making sure they don't get treatment by restricting research and access to antiprotozoal drugs. So far, the results in Corvallis suggest that chronic diseases will produce poverty.

Corvallis is one good example. It's a small town - about 50,000 people - with the unusual distinction of having more residents with advanced degrees per capita than any other town in the US. That may be because the employers are engineering companies (Hewlett-Packard and CH2MHILL) and the local University. The salaries from those jobs help keep the local economy afloat.

But when I started interviewing people about Blastocystis in 2006, I was amazed at the economic costs of the disease to families. A engineering or professional job may pay $60,000-$80,000 a year, but many families were describing yearly medical bills that ran into the five figures to manage the disease. In the more severe cases, patients develop neurological and psychiatric problems, and one of the larger recurring costs involved weekly sessions at the psychiatrist (see interesting side note below*).

It doesn't take a lot of math to figure out that employers might not be happy about spending $70,000 in salary in an employee, and then having to fork out an additional $20,000 in medical expenses. In some cases, multiple members of the same family were impacted, so an employer may have to support 3 or 4 sick people. And the disease turns many patients into basket cases, so in addition to spending more, employers get workers who are sick more often, and have a much lower productivity even when they show up for work.

One of the first indications that Blastocystis might be changing the economy came when HP began laying off employees, even while the local medical center started expanding their center for performing endoscopies/colonoscopies. That's what US doctors do to patients when they get Blastocystis - the procedure costs around $4000. Blastocystis patients also get MRI scans ($2000), barium enemas with contrast ($2500), and a host of other tests.

As HP is shutting down its Corvallis site, it is expanding its sites in Singapore and Asia. Singapore is that country that tests immigrants to make sure they don't have Blastocystis. If you hire people in Singapore, 10-20% of them are not infected with Blastocsystis. The country tests immigrants. They also did not shut down their Blastocystis research lab in the 1990's when US doctors objected. They now have one of the world's leading Blastocystis research efforts, and the rate of infection in their population is less than 3%, about what the US had in the 1980's.

A "new" Corvallis is emerging, and it looks a lot like a slum from Brazil or Mexico than what we think would be a middle-class community. In addition to producing a loss of jobs to the local economy, HP's pullout is threatening to bankrupt the town of Corvallis, since a large portion of the town's taxbase came from HP. Even though they still have their site, most of the buildings are now empty, and HP has contested their tax assessment in court. The company is reportedly considering demolishing the buildings on the site to reduce their tax burden.

With HP's loss, some other high tech companies have arrived in Corvallis, but the way they employ people is very different. I work at one of those companies. High tech companies with employees in the US will commonly have design centers both in the United States and overseas, often in Korea, Singapore and China. When business picks up, the companies can choose to hire workers in either Asia or the United States. US workers have always been more expensive than overseas counterparts, but they were worth it because they could get the job done faster. The "Blastocystis tax" changes that formula, when you are considering hiring in a state that has been hit by Blastocystis (California, Oregon, Texas, Florida, New York, Ohio). If you hire in Beijing, Singapore, or Taipei, you are hiring a population where less than 2% is infected, but hiring from Santa Clara, Corvallis, or Portland gives you a population where the infection rate is ten times that. The result is you have to pay more medical costs for both the employee and dependents. And the productivity benefit is much lower. So it's not surprising to hear from high tech employees in Corvallis that the size of their company has grown substantially, but nobody has been hired locally in years.

-----------------

* As an interesting note, in the 1980's, United States researchers insisted that stomach ulcers were a psychiatric disease, and that patients should attend weekly therapy sessions for 18 months to try to cure their ulcers. Later, researchers in Australia discovered that the ulcers were caused by an infectious disease, and could be cured for about $20 of antibiotics.

What happened to those US researchers who were sending patients to psychiatrists for expensive and useless therapy? They continue to insist that gastrointestinal disease is caused by psychiatric problems, and they are now being bankrolled by the NIH to run the largest research effort into "IBS" patients. BRF has contacted that group many times to see if it would be possible to test US citizens with this disease for Blastocystis infection, as has been done overseas. All requests have been refused.

World War II Syndrome Averted

2010-06-22T18:23:00.000-07:00

In the United Kingdom, hospitals treating World War II veterans were seeing some disturbing symptoms. Vets who were imprisoned as POW's in South-East Asia were developing unexplained immune symptoms, including fever, respiratory problems, skin rashes, and gastrointestinal complaints. They had a high rate of psychiatric illness, as well as chronic obstructive pulmonary disease (COPD).

If this sounds familiar, it should be - many US veterans who served in the Middle East experienced similar problems. In the United States, researchers coined the term "Gulf War Illness" , called it a multi-symptom disease, and immediately blamed toxins. They embarked on what is now a $350 million, two-decades long government-funded boondoggle to try to prove that these symptoms were caused by nerve gas exposure. Almost twenty years later, none of the veterans have been cured by this research. Even individuals involved in the projects admit that virtually no progress has been made in explaining the symptoms.

But the UK doctors, lead by Dr. Geoffrey Gill, took a different approach. They didn't have millions in government funding, but they did have a knowledge of infectious diseases seen overseas. The symptoms seen in World War II veterans match well with an gastrointestinal infection that is common in South East Asia, called Strongyloides stercoralis. But was it possible that the veterans had acquired an infection 40 years ago, and it had been missed all this time? By using a combination of several newer diagnostics for the infection, researchers have shown that 10-20% of the UK's POW's from the Far East are still infected with this disease. The prevalence of the disease in the general population in the UK is almost zero. By treating the patients with the proper anti-parasitic drugs, physicians are able to relieve the symptoms and help the POW's lead a more normal life.

To help US researchers learn from the UK's experience, BRF has proposed the Patient Protection Act. This legislation would require that researchers receiving federal funding to investigate novel "syndromes" ensure that human subjects in their studies receive the same level of care they would get if they were being seen by a physician outside of the study. That means that a researcher who is seeing veterans who have symptoms of Gulf War Syndrome like fatigue, diarrhea, and abdominal pain would have to perform a test to exclude common infections in such individuals.

References:

Gill GV, Welch E, Bailey JW, Bell DR, Beeching NJ. Chronic Strongyloides stercoralis infection in former British Far East prisoners of war. QJM. 2004 Dec;97(12):789-95.PMID: 15569810

Rose, E. Strongyloides Stercoralis. Medscape e-Medicine, Jul 24, 2008. http://emedicine.medscape.com/article/788652-overview

Blastocystis: Age, Prior Exposure, and Genetics

2010-06-22T15:23:00.000-07:00

A common complaint concerning Blastocystis infection is that some people have symptoms, while others do not, making it impossible to ever associate the infection with a disease. It may be worth spending a few moments listing the factors which may be relevant in determining expression of symptoms in Blastocystis infection, and also reviewing the apparent "enigma" seen in studies of Giardia and E. histolytica

Children

A consistent pattern seen in the last several years suggests that chronic infection in children is usually asymptomatic, or at least sub-clinical, even while acute infection may be symptomatic. A study of Columbian schoolchildren did not find a relationship between Blastocystis and nutritional status. Another study of Thai children aged 6-13 which used stool culture and PCR to identify the infection found that gastrointestinal symptoms were uncorrelated with Blastocystis. This finding may be expected from studies on E. histolytica, which suggest that most serious cases occur only in individuals over 30 years of age. Similarly, researchers studying Giardia in children in developed countries have suggested that it is virtually non-pathogenic.

These findings could be predicted by examining the epidemiology of the disease which Blastocystis is most closely linked to - IBS - is uncommon in children. Researchers have found that in families that have IBS, children will often experience chronic functional abdominal pain (CFAP), which converts to IBS when they become adults. As such, it may be the case that chronic infection is likely to be associated with either no symptoms, or recurrent abdominal pain in the absence of diarrhea in most children.

Homosexuals

Studies of adults show a consistent correlation between Blastocystis and symptoms, with a few exceptions which are worth mentioning. Two frequently sited studies performed in Oakland, California in the late 1980's identified Blastocystis as non-pathogenic based on a lack of correlation between symptoms and infection. The same researcher had previously published studies showing that Giardia and E. histolytica infection were also uncorrelated with symptoms in male homosexuals from the same area. The lack of correlation between protozoal infections and symptoms is also reported in Cryptosporidium and E. histolytica.

What factor protects these individuals? Prior exposure may be the likely candidate. In experimental studies of human infection, if a human is infected with a gastrointestinal protozoan, then cured, subsequent infections are less severe or asymptomatic. This property has been used to develop a vaccine for E. histolytica. It may also explain why individuals in developing countries appear to be immune from the effects of E. histolytica

Good Genes

Host genetics have been found to play a role in expression of symptoms with virtually every gastrointestinal pathogen, and it's likely that Blastocystis is no exception. Genetically determined response to bacterial pathogens is summarized in a recent review. Studies into E. histolytica and Giardia usually focus on polymorphisms that influence cytokine production, although variation in the regions that encode for Toll-Like Receptors may also play a role.

So why did Blastocystis become a larger problem in the last 20 years? With improvements in sanitation, patients may be experiencing their first infection when they have reached their 20's or 30's. These infections may be more likely to convert to chronic illness. This would suggest that in addition to treating the infection, we need to vaccinate the population to maintain the same level of health experienced by earlier generations.

Year	Disease	Journal	Title	Conclusion
2005	E.histolytica and HIV	Am J Trop Med Hyg 2005, 73(2):296-300.	Infection by human immunodeficiency virus-1 is not a risk factor for amebiasis
1992	E. histolytica and HIV	Scand J Infect Dis 1992, 24(5):567-575	Absence of an association between enteric parasites in the manifestations and pathogenesis of HIV enteropathy in gay men. The GI/HIV Study Group
1986	E. histolytica	N Engl J Med. 1986 Aug 7;315(6):353-6.	Entamoeba histolytica as a commensal intestinal parasite in homosexual men.
1954	Giardia	American journal of hygiene 59 (2): 209–20	The experimental transmission of human intestinal protozoan parasites. II. Giardia lamblia cysts given in capsules
1956	E. histolytica	Am. J. Trop. Med. Hyg., 5(6), 1956, pp. 1000-1009	Experimental Entamoeba Histolytica Infections in Man	81 prisoners were experimentally infected. 42 successful infections. No patients showed symptoms. Isolate was demonstrated to be pathogenic in dogs, guinea pigs, and rats.
1925	E. histolytica	Proc Natl Acad Sci U S A. 1925 May; 11(5): 239–246	The Rat as a Possible Carrier of the Dysentery Amoeba	Harvard professor is asymptomatic carrier of Blastocystis, uses isolates from own stool samples to infect animals experimentally. Animals are shown to develop illness.
1984	Giardia and E. histolytica	Am J Trop Med Hyg. 1984 Mar;33(2):239-45	Intestinal protozoa in homosexual men of the San Francisco Bay area: prevalence and correlates of infection.	No correlation between infection with Giardia and E. histolytica and symptoms

These studies have shown no correlation between symptoms and infection with Giardia, E. histolytica and Cryptosporidium. Even immunocompromised patients with AIDS seem
to tolerate E. histolytica well.

Researchers link infection to contaminated water and produce

2010-06-22T15:08:00.000-07:00

Dear BRF,

"Can you tell me how long Blastocystis lives on surfaces? My kids, my husband, and I all developed symptoms about a year ago. We have had a terrible time with doctors, and can't get any kind of treatment that will work. We have a chicken coop, and think that we might have gotten it from there."

"Ever since my husband got sick with Blastocystis, I've noticed a ring of scum in the toilet. Is it possible that Blastocystis is growing there?"

ANSWER:

There are less than a dozen studies on the transmission of Blastocystis. But the organism appears to be very similar to other gastrointestinal protozoa like Giardia and E. histolytica. By comparing the findings in Blastocystis to what we already know about other protozoal diseases, we can come up with some tentative answers.

In regards to toilet scum, I don't believe anyone has ever reported being able to grow Blastocystis in a bowl of water exposed to the air. In the labs we work with, it's necessary to use a device which scrubs the oxygen out of the air. When the device doing the scrubbing wears out, the Blastocystis stops growing. Blastocystis cysts can survive for some time when exposed to air, but surviving is not the same as growing.

More research needs to be done on Blastocystis transmission, but so far, it looks like Blastocystis needs to stay wet in order to be transmitted. This is true of most gastrointestinal protozoal infections, and almost all outbreaks can be traced to drinking water, or some kind of wet food (lettuce, carrots, etc.)

Drinking Water and Pets

A 2010 study performed on 25 patients with Blastocystis infection from Turkey examined samples taken from the patient's homes to understand transmission mechanisms. 12% (3/25) of the tap water samples tested from the homes were found to contain Blastocystis, and all samples showed subtype 1. Additionally, all of the pets owned by Blastocystis-positive patients were positive for Blastocystis, suggesting that pets may be another way that Blastocystis is transmitted (or that owners had infected their pets). The study was perfomred by the Parasitology Department of the a medical school in Adana, Turkey.

Drinking water was also identified as transmission vector for Blastocystis sp. subtype 1 in another study. The study, published in the American Journal of Tropical Medicine and Hygeine, examined five water samples taken from an elementary school in Thailand, and compared this to Blastocystis found in the students in the school. In the study, 675 stool samples were taken from children aged 6-13 in Central Thailand. From those samples, 18.9% were found to be positive for Blastocystis, with 77.9% being subtype 1, and 22.1% being subtype 2. The study examined factors that could lead to infection. The researchers determined that factors such as age, sex, family income, number of children per household, and history of animal contacts were uncorrelated with Blastocystis infection. Because the subtype from drinking water matched the primary subtype in children, it was suggested that drinking water was a likely source for transmission. The drinking water from the contaminated sample was supplied by a cistern fed by rain water collected from a roof with no subsequent filtration or chlorination. The researcher suggested that bird droppings left on the roof had produced the contamination.

Many studies have identified contaminated produce as a transmission vector for protozoal diseases like Cryptosporidium and Cylcospora, and Blastocystis seems to be following in this trend. Contaminated produce has been identified as a potential transmission source for Blastocystis by researchers in the Middle East. Overall, the researchers found that 12.6% (8/63) of the vegetables samples had Blastocystis contamination. Green onions were contaminated most frequently (about 25%), but contamination was also found in lettuce, radishes, and watercress. Many produce samples were also contaminated with Ascaris lumbricoides, Strongyloides sercoralis, and Ankylostoma duodenale. The rate of contamination throughout the year, with about 8% of the produce being contaminated in November, January-March, and May while about 12-16% was contaminated in September, October, December, and April.

References

Al-Binali AM, Bello CS, El-Shewy K, Abdulla SE. The prevalence of parasites in commonly used leafy vegetables in South Western, Saudi Arabia. Saudi Med J. 2006 May;27(5):613-6.PMID: 16680247

Eroglu F, Koltas IS. Evaluation of the transmission mode of B. hominis by using PCR method. Parasitol Res. 2010 Jun 11. [Epub ahead of print]PMID: 20544220

Cook N, Nichols RA, Wilkinson N, Paton CA, Barker K, Smith HV. Development of a method for detection of Giardia duodenalis cysts on lettuce and for simultaneous analysis of salad products for the presence of Giardia cysts and Cryptosporidium oocysts. Appl Environ Microbiol. 2007 Nov;73(22):7388-91. Epub 2007 Sep 21.PMID: 17890337

Gourabathini P, Brandl MT, Redding KS, Gunderson JH, Berk SG. Interactions between food-borne pathogens and protozoa isolated from lettuce and spinach. Appl Environ Microbiol. 2008 Apr;74(8):2518-25. Epub 2008 Feb 29.PMID: 18310421

Keraita B, Konradsen F, Drechsel P, Abaidoo RC. Effect of low-cost irrigation methods on microbial contamination of lettuce irrigated with untreated wastewater. Trop Med Int Health. 2007 Dec;12 Suppl 2:15-22.PMID: 18005311

Leelayoova S, Rangsin S, Taamasri P, Naaglor T, Thathaisong U, Mungthin M, 2004. Evidence of waterborne transmission of Blastocystis hominis. Am J Trop Med Hyg 70: 658–662.

Suresh K, Smith HV, Tan TC, 2005. Viable Blastocystis cysts in Scottish and Malaysian sewage samples. Appl Environ Microbiol 71: 5619–5620.

Researchers Determine Split between Blastocystis and D. fragilis in IBS patients

2010-06-22T12:30:00.000-07:00

http://www.bilerico.com/2010/01/jamie-lee-curtis.jpg
http://www.sohh.com/img/Camron-2009-02-03-300x300.JPG

These celebrities all have IBS. According to international researchers, it's likely their symptoms are being caused by an infectious disease that the US medical researchers are ignoring.

Irritable bowel syndrome (IBS) may sound like a funny disease, but it's anything but funny to the people who have it. The symptoms are severe enough that many patients are unable to function normally in soceity. Patients with IBS have all of the symptoms seen in many gastrointestinal infections - abdominal pain, diarrhea, fatigue, and constipation. (Yes, some gastrointestinal infections will produce constipation.) But the medical community in the United States believes that people with IBS don't have an infectious disease. They think that symptoms in IBS patients are caused by something the patient is doing wrong, or some kind of defect in the patient's digestive system.

This has been an issue of contention between the US medical community and researchers overseas for almost 20 years. International groups have pointed to the high prevalence of IBS, which now reaches 30% in developing countries, and indicated that it's unlikely this many people would develop chronic gastrointestinal illness for no particular reason. Scientists at a public health lab in the UK have published studies specifically urging that doctors exclude infectious diseases before diagnosing their patients with IBS, while US researchers have generally sidestepped the issue of infectious diseases while promoting their own research projects. Most US grant funding for IBS goes to physicians who indicate that patients with IBS have something wrong with them, such as as a psychiatric illness.

Presumably, if the US researchers are wrong, it would be possible to examine IBS patients and find infectious diseases in them, and then show those diseases produce illness in animal studies. This is exactly what many researchers are doing. The two infectious diseases which repeatedly turn up in IBS patients are Blastocystis and D. fragilis. Together with Giardia, E. histolyitca, and Cryptosporidium, these diseases make up the "Big 5" protozoal infections which make up most of the protozoal infections found in humans. All of the organisms are single-celled parasites which are transmitted through contaminated food and water. Some of these organisms - such as Cryptosporidium - will only produce temporary symptoms in human, others seem to be able to establish themselves for life in some otherwise healthy patients. Blastocystis and D. fragilis are frequently cited as the two "neglected protozoal diseases." The research done to date suggests the clinical diagnostics used for these diseases are inadequate, and the treatments for Blastocystis are also unreliable.

Studies looking at Blastocystis in IBS patients are more common, but D. fragilis has also been found in those individuals. A study from the Center for Digestive Diseases in Australia reported that a half-dozen patients diagnosed with 'IBS' actually had D. fragilis infection. One patient reported their symptoms were life-long. The patients recovered after the infections were treated.

Blastocystis / D. fragilis Split

Some studies have found Blastocystis in IBS patients, while other studies have found D. fragilis in IBS patients, but until recently, no study has looked at both infections. By looking for both infections similar methods, it's possible to get a picture of the extent to which each disease contributes to the IBS population.

Researchers at the Department of Medicine of Aga Khan Medical School in Karachi Pakistan have published the first combined Blastocystis-D. Fragilis study. The study was performed on 330 patients - 171 with diarrhea predominant IBS, and 159 healthy controls. By culturing stool specimens, the researchers found Blastocystis in 53% (90/171) of the IBS patients, and D. fragilis in 4% (7/171) of that group. Blastocystis and D. fragilis were present in 16% (25/159) and 1.3% (2/159) of the healthy controls.

Some researchers have complained that looking for Blastocystis in patients is meaningless, because there may be other "hidden" organisms present. While this problem would potentially be present in any infectious disease study, the complaint appears to be more common in Blastocystis studies, and researchers at the Pasteur Institut have noted this with some frustration, describing the "impossibility of excluding all infectious organisms in a study." For this study, the Pakistani researchers screened specimens for all other common gastrointestinal infections, including Giardia, Cryptosporidum, Salmonella, Campylobacter jejuni, Clostridium difficile, and Vibrio Cholerae.

The study also compared three diagnostic techniques - microscopy, PCR analysis, and culture. In prior Blastocystis studies, researchers using microscopy have reported that they could only detect about a third of the samples that were positive by PCR or culture. In this study, the researchers were able to detect 91% of the culture-positive samples, suggesting the possibility that technician skill may impact the reliability of lab tests performed.

IBS Impact

This research says that IBS is largely a disease created by a problem in the medical system. Studies similar to the most recent work have been available for 13 years, yet the NIH and CDC have refused to take any action in examining infectious diseases in IBS patients. US patients with IBS may have a great deal to complain about: research currently sponsored by the NIH portrays IBS patients as malingerers, mentally deficient, and incapable of dealing with normal life stresses.

"When you tell a patient with chronic illness that they have IBS, the focus shifts from the infection to the patient. IBS is a popular explanation because it is a blame-shifting tool. IBS stops patients from asking questions like 'Where did I contract this disease?' and 'Why is there no treatment available?' The problem is no longer the infectious disease - the question becomes what is the patient doing wrong" according to Ken Boorom, founder of the Blastocystis Research Foundation. The rate of Blastocystis infection in the US has skyrocketed.BRF publications suggest that 30-60 million US citizens have contracted Blastocystis infection in the last 15 years. BRF has advocated addressing IBS as a public health problem by diagnosing patients and treating the disease, and working to prevent further infection.

"We're seeing the impact of the epidemic in everyday life. IBS commercials and IBS products are all being produced to target the population of Blastocystis patients which the NIH and CDC will not address. The NIH hasn't approved a single Blastocystis grant in 15 years. "

To help address this issue, BRF has proposed Federal legislation that will create formulas to determine how research money is divided among infectious diseases, replacing the current system which allocates money to researchers who have the most clout. Criteria for allocating funding would consist of the prevalence of the disease in the US population, the severity of symptoms in the disease, and the reliability of diagnostics and treatments. The act is intended to help prevent special interest groups from shutting down research into infectious diseases as they become epidemic in the US.

References:

Stensvold CR, Arendrup MC, Mølbak K, Nielsen HV (2007) The prevalence of Dientamoeba fragilis in patients with suspected enteroparasitic disease in a metropolitan area in Denmark. Clin
Microbiol Infect 13:839–842

Brody TJ, Warren E, Wettstein A, Robertson P, Recabarren A (2002) Eradication of Dientamoeba fragilis can resolve IBS-like symptoms. J Gastroenterol Hepatol 17:A103

Hussain R, Jafri W, Zuberi S, Baqai R, Abrar N, Ahmed A, Zaman V (1997) Significantly increased IgG2 subclass antibody levels to Blastocystis hominis in patients with irritable bowel syndrome.Am J Trop Med Hyg 56:301–306

Yakoob J, Jafri W, Jafri N, Khan R, Islam M, Beg MA, Zaman V (2004) Irritable bowel syndrome: in search of an etiology: role of Blastocystis hominis. Am J Trop Med Hyg 70:383–385

Yakoob J, Jafri W, Beg MA, Abbas Z, Naz S, Islam M, Khan R (2010) Irritable bowel syndrome: is it associated with genotypes of Blastocystis hominis. Parasitol Res 106:1033–1038

Metastudy finds researchers overwhelmingly report Blastocystis to be disease causing

2010-06-22T11:43:00.000-07:00

An analysis of medical studies published on Blastocysts finds that medical researchers overwhelmingly have identified Blastocystis as disease causing. The study began by examining every Blastocystis paper indexed in the NIH's PubMed database before January 19, 2008. From an initial group of 680 studies, the research team identified 102 which met the criteria of the study - mainly, an abstract was available, and the researcher made a conclusion about Blastocystis' ability to cause disease following laboratory or clinical study. Of those 102 papers, 84% (86/102) identified Blastocystis as disease causing, while 16% (16/102) indicated that it did not cause disease.

"In this study, we took a hard look at whether there really is really controversy around Blastocystis, or whether medical professionals are using the term to evade their professional responsibility," noted study co-author Ken Boorom. The study was co-authored by 11 scientists from 9 countries. The authors included researchers who were working at the United States Center for Disease Control, China's Center for Disease Conrtol, the United States Air Force, the Pasteur Institute, a World Health Organization Collaborating Center for Parasitological Research, the Scottish Parasitology Laboratory, and additional public health labs in Thailand, Greece, and Turkey.

The study was published in BMC Parasites and Vectors. In addition to providing the final results, interested researchers can download and examine all the raw data used in the analysis, such as the list of 680 PubMed indexed studies, why each one was included or excluded, and a list of the 102 studies included in the final analysis.

Garbage In, Garbage Out

One of the most striking findings was that most of the studies identifying Blastocystis as harmless were published before 1994. When studies published in the last 15 years are considered, 95% of the researchers concluded Blastocystis was disease causing. "If there is a large group of people who are sure that Blastocystis is harmless, they aren't getting past the peer review process. We apparently have a medical system that is leaderless, and run mostly by armchair quartebacks," noted Boorom.

Why did the early studies have different conclusions? Blastocystis can be difficult to detect, and pathology laboratories were largely unregulated in the United States before 1993, when congress implemented the Clinical Laboratory Improvement Act (CLIA). The acts, were introduced to stop the creation of "laboratory sweatshops" where technicians were expected to analyze hundreds of samples per day. Before this, laboratory analysis could be performed in individuals without any formal training or testing, and the failure of one lab to properly identify cervical cancer cells caused the death of many women. Prior to CLIA, some physicians performed their infectious disease tests, and tests could also be performed by any nurse or staff member regardless of training. Because Blastocystis looks very similar to fat cells, or white blood cells, researchers may have been mis-reading samples.

"This is the largest study of this kind. This is the first time a group has systematically examined every study from a standard database like PubMed, and used that to examine consensus opinion in the medical research community" Boorom commented. Papers published in following years used more advanced methods for investigating the virulence of organisms, such as animal studies. Researchers publishing later papers may have had more reliable diagnostic services, since more Blastocystis photographs were published, and better diagnostic methods were developed. The study also found that none of the papers that contradicted Blastocystis as a pathogen were published by individuals identified as parasitologists. "That's like getting advice on HIV infection without asking a virologist." commented Boorom.

References:

Boorom KF, Smith H, Nimri L, Viscogliosi E, Spanakos G, Parkar U, Li LH, Zhou XN, Ok UZ, Leelayoova S, Jones MS. Oh my aching gut: irritable bowel syndrome, Blastocystis, and asymptomatic infection. Parasit Vectors. 2008 Oct 21;1(1):40.PMID: 18937874

Clinical Diagnostics Miss Most Blastocystis Infections

2010-06-18T11:35:00.003-07:00

US Air Force researchers, working in conjunction with Oregon State University and the Blastocystis Research Foundation, have published a study suggesting that the clinical diagnostics used for detecting Blastocystis in the United States will fail to detect the infection in many cases. The study, published in Parasitology Research, recruited patients who had developed chronic gastrointestinal illness of unknown cause. Many of the 22 patients in the study had made multiple visits to physicians to diagnose their illness, but none of the tests performed had yielded positive results. The USAF lab re-tested stool samples from the patients for Blastocystis using a more advanced technique which involves extracting DNA from the sample, and searching for a pattern which matches Blastocystis. Using that technique, the study showed that many patients will test positive for Blastocystis infection, even though multiple tests for infections performed at commercial laboratories produced negative results.

Clinical laboratories have been diagnosing Blastocystis infection by looking at fecal samples under a microscope for decades. The technique has not changed much since the 1700's, when scientists first began identifying small organisms with microscopes, as demonstrated in the photo above. Although the method is inexpensive, trying to find Blastocystis cells in human samples can be difficult. Some patients will produce samples which are clearly positive, due to the large number of Blastocystis cells present. But many patients who have symptoms do not shed enough cells in the sample to make identification easy. To complicate matters, Blastocystis cells don't have many distinguishing features. Researchers have reported that they look like fat cells, or white blood cells, which can make identification difficult. The preservative used for collecting samples may damage the cells making identification difficult, and time pressures placed on technicians may limit how thorough the examination can be. BRF Founder Ken Boorom commented, "It's like trying to identify a 3-week old piece of roadkill on an interstate highway."

Blastocystis can be difficult to find. LEFT: Blastocystis in stool sample. RIGHT: Same organism stained. Photo courtesy of Hannaa Moussa, Cairo University, Egypt

The DNA identification procedure used at the laboratory is similar to the technique used by labs to identify suspects in a crime. In the first phase of the process, the DNA is extracted, and purified from the sample. In the second stage, a template that matches a sequence known to exist in Blastocystis is introduced into the sample, and using a bit of chemical magic called PCR amplification, any piece of DNA with a similar sequence is amplified by a factor of over 1 million. In the second stage of the process, which ensures that Blastocystis DNA was amplified, extra DNA that was amplified with the original pattern is examined, and researchers use the information to "genotype" the Blastocystis. There are nine major types of Blastocystis that can be found in humans, and each one is associated with a specific signature. In the USAF study, most of the samples exampled belonged to subtype 3. Subtype 3 is the type of Blastocystis most commonly found in patients in both the Middle East, Europe, and Asia.

The findings from the USAF study match those from earlier studies published in Denmark, Thailand, and the United Kingdom. Those studies examined fecal specimens from patients using a microscope, and then used an alternate technique, and compared the results. The 2002 study from Thailand examined over 300 specimens from soldiers with the Thai Royal Army with a culture technique. In that technique, the sample is incubated in a tube with a nutrient broth that encourages Blastocystis to grow. Direct examination of fecal specimens with a microscope was able to find only about a third of the infections which were detected with the culture technique.

A comparative study from Denmark compared with PCR technique used in the US study, the culture technique used in Thailand, and examination by a microscope. That study also found that direct examination by a microscope found only about a third of the infections found by the PCR and culture techniques. The study from the United Kingdom examined 1000 specimens fecal specimens, and found Blastocystis in 39 of them using the culture technique. All of the samples were negative when examined directly with a microscope.

Researchers performing similar studies with other gastrointestinal protozoa such as Giardia, E. histolytica, and Cryptosporidium have reported that direct examination of fecal specimens fails to detect many or most infections. The studies have suggested that more modern diagnostic tools be used, such as PCR analysis, but US labs have been slow to respond to these studies and no major lab networks offer this technique. Another technique - immunofluorescence detection - has been developed for clinical use, and is available from many US labs for those three organisms, but not for Blastocystis.

US Diagnostic Labs Using Loophole

The US Food and Drug Administration regulates diagnostic devices, such as the HIV test. These devices are typically able to detect over 98% of infections, and if the sensitivity falls below this, companies marketing the diagnostic devices can be fined or forced to remove the test from the market. Companies are also required to track failures, report them, and take action. However, the test used by US physicians - called an Ova and Parasite Examination - is not subject to FDA regulation. Because it is a procedure, it is regulated by an act of Congress called the Clinical Laboratory Improvement Act. Surprisingly, this act only requires that laboratory technicians performing the test receive a certain type of training and be able to pass a test. Neither Congress nor the FDA have ever worked to determine if the tests covered by CLIA actually detect diseases reliably.

Many US physicians are unaware of the distinction between FDA-regulated tests and CLIA-regulated tests, and as such they may assume that the sensitivity of CLIA tests like the Ova and Parasite Examination is comparable to that seen in FDA-regulated tests. Although the government has declined to take any action, BRF has petitioned several major US diagnostics laboratories to voluntarily disclose the sensitivity of this type of testing, as it has been reported in existing peer reviewed medical literature.

Boorom noted, "This isn't just about Blastocsystis. Clinical labs have sidestepped this problem with a half dozen infectious diseases. The labs do a great job of disclosing how much money the patient owes for the tests. They should also disclose the reliability of these tests to physicians and patients on the results from, or at least include a link to their web site with a listing of the how reliable the tests are." Patients who are infected, but test negative, may receive unnecessary testing and delays in treatment. They also may infect their family members, or members of the community.

BRF has contacted LabCorp, Quest Labs, and Oregin Medical Labs with the suggestion that they summarize and disclose results from studies which have compared the CLIA-regulated tests to more modern testing methods. None of the labs have been responsive. "Clinical labs complain about excessive government regulation, but they aren't making a good case for self-regulation by ignoring this," according to Boorom. To help address the problem, BRF is proposing legislation that will require the CDC to assess the reliability of existing clinical diagnostics by summarizing existing peer reviewed papers from major medical journals. The CDC will then be required to post the results from that assessment to their web site, and laboratory networks will be encouraged to disclose this information on their tests.

References:

Leelayoova S, Taamasri P, Rangsin R, Naaglor T, Thathaisong U, Mungthin M. In-vitro cultivation: a sensitive method for detecting Blastocystis hominis. Ann Trop Med Parasitol. 2002 Dec;96(8):803-7.PMID: 12625935

Jones MS, Whipps CM, Ganac RD, Hudson NR, Boorom K. Association of Blastocystis subtype 3 and 1 with patients from an Oregon community presenting with chronic gastrointestinal illness. Parasitol Res. 2009 Jan;104(2):341-5. Epub 2008 Oct 16 PMID: 18923844

Stensvold CR, Arendrup MC, Jespersgaard C, Mølbak K, Nielsen HV. Detecting Blastocystis using parasitologic and DNA-based methods: a comparative study. Diagn Microbiol Infect Dis. 2007 Nov;59(3):303-7. PMID: 17913433

Suresh K, Smith H. Comparison of methods for detecting Blastocystis hominis. Eur J Clin Microbiol Infect Dis. 2004 Jun;23(6):509-11. Epub 2004 May 28.PMID: 15168139

Researchers Report that Blastocystis Promotes Growth of Cancer Cells

2010-06-18T11:34:00.001-07:00

Mark didn't know what hit him. A few days after eating at a restaurant in Seattle, he started feeling tired all the time, and developed recurrent diarrhea. "It looked like what comes out of one of those Play-Doh extrusion toys." His physician ordered tests to look for infectious diseases but the only positive results came back on the stool test, which showed he was infected with Blastocystis. A course of metronidazole gave him brief relief, but the symptoms returned a week after the medication ran out. After several months, he started developing other problems - skin rashes, joint pain, and the most troublesome - a chronic bronchial infection. A half-dozen tests for immunological disorders followed - all were negative, although his CD4 count was slightly lowered. Years later, Mark's health hasn't improved much, and he has developed new problems, with "multiple chemical sensitivities." He noted, "I'm only 40, but I cell like I'm about 90."

Doctors treating patients with immunological disorders have long wondered about what to do about Blastocystis in their patients. Is it opportunistic, simply the result of the immunological disease? Is it contributing to the disorder? Researchers at the University of Malaysia may have answered part of this question in a paper published in the March 2010 issue of Parasitology Research. By exposing cultures of human cells to antigens produced by Blastocystis, the researchers determined that Blastocystis produces compounds that can shut off specific immunological responses in the host.

The researchers used peripheral mononuclear blood cells (PMBC's) and human cancer cells in their study. PMBC's play a role in orchestrating the body's immune response to both infectious diseases and cancer. The researchers found that when PMBC's were exposed to the Blastocystis antigen, the production of many of chemicals the body uses to coordinate immunological responses was reduced. Production of interferon-gamma, interleukin 6 (IL-6), and interleukin-8 (IL-8) were reduced by a factor of 2, 2.5, and 3.6 respectively. Additionally, the expression of two genes which play a role in the body's defense against cancer were reduced. Expression of the tumor suppressor gene p53 was reduced by a factor of 1.3. Production of TNF-alpha was relatively unaffected. In addition to down-regulating immunological factors, the Blastocystis antigen promoted the growth of cancer cells. The Blastocystis antigen was able to produce these effects at a concentration of 1 microgram/milliliter. The would be equivalent to a dosage of about 70 milligrams in a 150 pound adult, making it nearly as potent as the immunosupressant drug hydrocortisone. This study examined the effect of the water soluble antigen present in Blastocystis, suggesting that the antigen may be able to circulate in the host's bloodstream, producing symptoms in parts of the body distant from the site of the Blastocystis infection.

Dr. Suresh Kumar, the head of the lab which performed the research, has been publishing papers on Blastocystis since the early 1990's, making Malaysia's Blastocystis lab one of the longest-running continuous efforts in Blastocystis research. The group has previously published papers on Blastocystis in cancer patients, but in those studies it was not clear whether Blastocystis was the result of the cancer or whether it might be contributing to it. This study suggests Blastocystis may speed the progression of cancer by shutting off host immunological functions.

Immunomodulatory properties of Blastocystis have been previously studied. Researchers in Germany have studied the impact of Blastocystis in-vitro, and Chinese researchers have suggested that Blastocystis suppresses CD4 cell production based on patient studies. This was the first study to partially refine an antigen and quantify its impact on human cells in terms of gene expression. The research may explain why some patients with chronic Blastocystis infection subsequently develop other health problems, including recurrent infections and immunological abnormalities.

Parasitic organisms commonly exhibit immunosuppressive properties, which are believed to contribute to the survival of the organism by turning off host immune responses. A 2002 review, authored by research scientists at the US National Institutes of Allergies and Infectious Diseases, identified over a dozen compounds produced by parasitic protozoa which turn off host immunological functions. Compounds that interfere with host immune responses have also been identified in Giardia and E. histolytica. Even larger parasitic organisms can get into the act - the tick that carries Lyme disease produces a compound in its saliva which "turns off" the ability of white blood cells to act on invading organisms.

References:

Chandramathi S, Suresh K, Kuppusamy UR. Solubilized antigen of Blastocystis hominis facilitates the growth of human colorectal cancer cells, HCT116. Parasitol Res. 2010 Mar;106(4):941-5. Epub 2010 Feb 18.PMID: 20165878\

Tan TC, Ong SC, Suresh KG. Genetic variability of Blastocystis sp. isolates obtained from cancer and HIV/AIDS patients. Parasitol Res. 2009 Oct;105(5):1283-6. Epub 2009 Jul 15.PMID: 19603182

Sacks D, Sher A. Evasion of innate immunity by parasitic protozoa. Nat Immunol. 2002 Nov;3(11):1041-7. Review.PMID: 12407413

Ferreira BR, Silva JS. Saliva of Rhipicephalus sanguineus tick impairs T cell proliferation and IFN-gamma-induced macrophage microbicidal activity. Vet Immunol Immunopathol. 1998 Jul 31;64(3):279-93.PMID: 9730222

Kamda JD, Singer SM. Phosphoinositide 3-kinase-dependent inhibition of dendritic cell interleukin-12 production by Giardia lamblia. Infect Immun. 2009 Feb;77(2):685-93. Epub 2008 Dec 1.PMID: 19047410

Why Do Professors Often Make Terrible Investigators (Editorial)

2010-06-17T23:45:00.000-07:00

"Contrary to what you've been taught, there is a right answer and a wrong answer. Just because you don't know the right answer, even if there is no way you could know the right answer, doesn't make your answer any less wrong." - House

One of the few TV shows I have time to watch is called, "House." It is about a physician who works as a diagnostician in a hospital in Pennsylvania. He leads a group of four other physicians to help diagnose cases of mystery illness which have defied diagnosis by other doctors. Of course, most of the cases are almost terminal, and the patient's life hangs on the ability to come up with the right diagnosis.

As both the Founder of the Blastocystis Research Foundation, and a 7-year patient, the ability of a group of professionals to make a decision in the span of a 1-hour TV show is particularly gratifying. In my Foundation work, I work with national organizations which have been unable to make a decision about Blastocystis for 20 years. This has generated a patient population between of between 30 and 60 million US citizens with chronic illness, making Blastocystis one of the most expensive diseases in the developed world.

The interactions portrayed in the show are particularly gratifying, as different theories are proposed and then junked based on experimental evidence. And doctors routinely re-run tests to verify the experiments. This is the way most engineering works in the United States, but it's not the way medicine works. This is why a practicing physician is expected to come to a conclusion about what is causing a patient's illness in five minutes, even while the US CDC and NIH have been incapable of any progress with regard to Blastocystis in the last 20 years.

In working with professionals in this area, one of the biggest problem is the size of their egos, and the unwillingness to change their viewpoint when new facts are presented. In the United States, most research is now conducted by University professors who compete for grants which fund their efforts, and indirectly fund most of their school's operations through "overhead" fees. For some reason, we've decided to conduct medical investigations in this environment.

In an earlier era, the United States had National Labs with salaried career microbiologists who investigated things and produced studies which had some degree of credibility, if only because as a salaried government employee, there would be no particular reason for them to exaggerate or falsify. Today, medical investigation is performed by Professors who have graduate students who are pursuing PhD theses. The conflict of interest should be obvious. If new facts are presented which suggest the direction of an investigation needs to be changed, making that change will disrupt multi-year NIH grants and ongoing PhD thesis work.

It might be fair to ask if BRF acts similarly with regard to IBS patients, and I'll say from the start, that the only research we support is that which will identify what is wrong with the patients and fix it. As an example, when researchers started identifying D. fragilis in patients last year, we began asking groups we are working with to test for Blastocystis and D. fragilis, and also to archive DNA in case there were another infection. From my viewpoint, we are only finding Blastocystis in half of the stool samples, so accounting for the other half of the patients is worthwhile. Maybe they are infected with Blastocystis, but it can't be detected in stool samples. Maybe they have D. fragilis. Maybe there is another protozoal infection which hasn't been discovered yet. Whatever it is, we want the right answer, because we expect that the treatments we recommend will be able to cure most of these patients, and that won't work if we're treating Blastocystis infection in patients with D. fragilis.

I encountered such a conflict of interest last year, when I visited a professor who was doing work to develop a nutritional supplement for patients with inflammatory bowel disease. As part of the study, the researcher would be collecting fecal samples from IBD patients before and after the supplementation. To assess microbiological content, the researcher was going to extract DNA from the samples and use PCR analysis. This methodology was almost exactly like the one we used in our Oregon study with patients who had chronic gastrointestinal illness of unknown cause, except that at the end we used a Blastocystis primer in the PCR analysis. I suggested that we could work together to add in a Blastocystis primer to the researcher's protocol, and offered to provide the primers for free and pay for the lab time. This would be similar to work we had already done with researchers in Turkey, but not yet with patients in the United States.

The tone of the conversation changed considerably when I suggested that a specific infection was responsible for symptoms in IBD patients. The researcher couldn't wait to get me out of there. To provide the back-story, nutritional supplements for patients with chronic GI illness are big business - they do not require FDA approval, they are cheap to make, and they sell well. This researcher had partnered with a private company that would be manufacturing the supplements. These new facts were disruptive to their plans.

There are a dozen stories similar to this one - virtually every University professor in the United States who is studying IBS has a substantial financial interest in making sure that their particular methodology is the one that gets used in clinical practice. This is why we've spent 20 years with no progress on Blastocystis, while researchers in countries with minuscule national research budgets are now making all the discoveries about the United States most prevalent chronic gastrointestinal infection.

The very word "Professor" should help us understand why individuals in this profession can't perform investigations. A professor, by definition, is someone who professes. They argue a point of view. In the United States, the often continue arguing it long past the point where it could possibly hold any value for patients. An investigator collects data and then forms a point of view, and changes it when new facts are found. If you look at the careers of University professors in the United States, you will not see any flexibility that suggests they are able to perform the role of an investigator. The Professors leading the fight to blame IBS on patient stress are the same ones who lost the fight 30 years ago to blame stomach ulcers on patient stress (they were found to be caused by a bacterial infection, a discovery which produced two Nobel Prize winners in Australia in 2005).

In most engineering circles, someone who did not change their tune would be washed up - a walking joke. In medicine in the US, they become the leading grant recipient for IBS studies.

Honesty

2010-06-17T22:27:00.000-07:00

One of my major activities at BRF is working with US and international researchers who are studying patients with unexplained chronic illness. When I started BRF in 2006, I assumed researchers wanted to cure patients. I thought that these people were investigators, and their primary focus was on understanding what was wrong with the patients and curing them. I soon found out most researchers got into their projects by specializing in a very narrow aspect of biomedical science, and then convincing grant committees that this research had some kind of relevance to a population of patients with chronic illness. That is, the patients are a means to an end. In the ecosystem of medical research, University researchers often portrayed as good guys, while drug companies are evil. But I've found that University often more focused on money than drug companies, possibly because they have less of it, and more driven by bottom line.

This became apparent to me last year, when I was talking with one researcher who was doing a project on to create a supplements for inflammatory bowel disease. The supplement would be based on a microbial product made by a private company. Part of project involved taking stool samples from patients before and after treatment, extracting DNA, and looking to see which organisms were present. The procedure was almost identical to one we had used in our study with the US Air Force on Blastocystis in patients with chronic gastrointestinal research. So I suggested that the researcher could produce a second paper investigating Blastocystis infection by adding one more step to the procedure. I even offered to work with the USAF to get the researcher the "primers", or DNA sequences to detect, that would be needed in the additional step.

When I suggested that a specific infectious disease was causing these symptoms, and it could be curable, the tone of conversation changed quickly. The researcher became uncomfortable. The focus quickly moved to ending the discussion and getting me out of their office as quickly as possible.

This wasn't an isolated instance. The single-minded focus on a particular etiology, and simultaneous desire to discourage other investigation seems to be a uniquely American phenomenon. I have never experienced anything like this with researchers from overseas, or with researchers born overseas who are now working in the US. To be honest, I have not yet met an American born University medical researcher who demonstrated any interest in the welfare of the patient population they have received money to study, be it Gulf War Illness, inflammatory bowel disease, or irritable bowel syndrome. They don't show any interest in knowing the impact the disease has on the patient population. Even when we've collected basic information, like how long patients have been sick, it gets thrown out of the paper. Researchers have sat on data for over a year without publishing it. When you're working with patients who are on disability, and writing every month hoping for an answer that will let them get back to work, this is a tough situation to deal with.

You would not know any of this from the way the US press lionizes University medical researchers. As a group, they have gotten a free-ride, based on historical precedent of people like Jonas Salk, the researcher who invented one of the major polio vaccines, and then refused to patent it, allowing anyone to manufacture it. The explosion in NIH funding over the last 10 years, and the importance of this to funding US medical universities has fundamentally changed the way medical research is done in the US. Modern medical researchers share much more with "dot com" entrepreneurs of the last decade.

Despite this, all discussions of "conflicts of interest" now deal with private companies - usually drug companies - influencing medical practice. There's no discussion of how medical researchers themselves stretch the truth, hype their projects, or shut out competing ideas. A University researcher promoting the idea that a "mind-gut" axis produces illness is no different from a marketing executive at a drug company. At least drug companies have to go through an FDA approval process before start shooting their mouths off. University researchers can make almost anything up, and if they can convince enough of their peers, the NIH money starts flowing. And they keep pitching ideas, even after they've showed no tangible results for decades.

I was watching the "Big Kahuna", a movie in which three salesman find themselves ensconced in a hotel in the Midwest for the purpose of selling industrial lubricants at a trade show there. One of them meets with a major client, but spends the entire time talking about Jesus, rather than the selling the company's products. In the first part of the movie, he appears to be the most sympathetic character. But as the story unfolds, we see this isn't a question about whether it's more important to talk about Jesus or to sell a product. If I could force US researchers to watch one movie, it would be this one.

"I believe that, that somewhere down deep inside you is something that strives to be honest. The question you have to ask yourself is, has it touched the whole of my life? That means that you preaching Jesus is no different than Larry or anybody else preaching lubricants. It doesn’t matter whether you’re selling Jesus or buddah or civil rights or how to make money in real estate with no money down. That doesn’t make you a human being. It makes you a marketing rep. If you want to talk to someone honestly, as a human being… ask him about his kids. Find out what his dreams are. Just to find out. For no other reason. Because as soon as you lay your hands on a conversation to steer it. It’s not a conversation anymore. It’s a pitch, and you’re not a human being, you’re a marketing rep. "

Five Worst Pieces of Pseudo-Science

2010-06-15T14:56:00.000-07:00

Pseudoscience is really nothing more than superstition with a few scientific facts thrown in to make it seem legitimate. In modern countries, we don't think about superstition as being damaging, mostly because we don't recognize it in our own society when we practice it.

(5) Disease is caused by "bad" bacteria in the gut, so we need to add "good" bacteria: Always be suspect when a scientific hypothesis has to resort to use of terms like "good", "bad", or "friendly." The hypothesis that some bacteria are provided by Mother Nature to help us fell apart when scientists killed the bacteria, and found out that it was just as effective dead as alive. Some further investigation showed that the these bacterial strains have DNA sequences that are able to activate specific receptors on cells in the human intestine. The receptors, called Toll Like Receptors (or TLR's for short) are able to detect DNA sequences associated with bacteria. The receptor responsible is TLR #10, which detects DNA sequences where the "G" and "C" nucleotide sequence appear next to each other frequently. TLR's control human immune functions, so it is plausible that activating TLR-10 can reduce symptoms in disease. But this isn't because bacteria are "friendly."

(4) Vaccines cause widespread auto-immune diseases: Proponents say that the prevalence of a number of auto-immune diseases has increased substantially in industrialized countries since the 1980's, and the number of vaccinations has increased since then. Therefore vaccinations must cause auto-immune disease, either by overloading the immune system, or by overdosing children on mercury.

The back-story you have not heard about is that the US shut down almost all of its federal microbial research labs in the 1990's when the NIH decided to shift all available resources to developing treatments for AIDS. Since then, about a half dozen new infectious diseases have emerged in the United States, and those are just the ones we know about.

Blastocystis infection increased from 2.5% in the 1980's to 23% in 2000 in California, so we should expect to see an increase in chronic illness associated with gastrointestinal illness, skin rashes, joint pain, and cognitive impairment. The disease has already been linked to inflammatory bowel disease and chronic gastrointestinal illness by researchers in a dozen countries.

Blastocystis isn't the only problem. HTLV - a new virus you've never heard of - is on the increase in the US. About 2-4% of the people who contract HTLV will develop lymphoma, and about 0.5% will develop myelopathy, a neurological condition involving paralysis. Hepatitis C is another emerging problem in the US, and that disease has become one of the leading causes of liver cancer.

For most of the 20th century, public health labs in the US lead the world in identifying new infectious diseases. Even when researchers in other countries suspected an infectious organism as the cause, it took the US to put a seal of approval on the research to allow it to be accepted globally. When the US walked away from this role in the 1990's, no other county stepped up to the task. The NIH has re-focused its energies away from protecting the public health, and toward supporting US medical schools with large grants, and studying a few specialized diseases which have strong advocacy groups. The real solution for the "auto-immune" disease explosion involves rebuilding our laboratory capacity, and installing leaders who will act as advocates for the public health.

(3) Cancer is due to bad diets and non-organic food: Everybody knows this is true, except cancer experts who actually read the studies for a living. This is a case of selective reporting - occasionally a study will find some relationship between food and cancer, and studies that say you can ward off cancer by changing your diet get publicity. But the relationship is weak enough that it's difficult to show this consistently. There are a number of factors that do lead to cancer, such as smoking, and sun exposure, and these can consistently be proven in studies.

"I don't know why I did all those push-ups!" - Jackie Onassis to a friend, at the end of her life, noting that the push-ups did not fend off non-Hodgkin's lymphoma.

Why do we like to hear stories that say we can prevent cancer by eating vegetables? There's a long tradition in the United States of associating illness with the behavior of a patient, even when the patient's behavior has nothing to do with it. We don't like to think that we live in an arbitrary universe. We want to believe bad circumstances only arise from bad actions. It's reassuring to think that we can control things outside of our control. Many societies develop beliefs that particular actions will influence events which are most likely out of their control. We call these superstitions.

Cancer isn't the only area where this shows up. The United States gave birth to the Christian Science movement, which interestingly has little to do with mainstream Christianity, or with science. But there are more Christian Scientists (about 250,000) in the United States than primary care physicians (about 100,000). The movement is based on the writings of Mary Baker Eddie, who was dealing with the theological implications of infectious diseases. Mainly, if God created the world, and God is good, why do smallpox and herpes exist? The answer is, of course, that these organisms don't cause disease. Disease is an indicator that you are distant from God, and the cure is prayer, rather than medical treatment.

Christian Science thought shows up frequently in New Age thought, as well as in Complementary and Alternative Medicine (CAM), both of which are strongly influenced by US thinkers. Oprah has espoused this philosophy in her book club, which features the the book, "The Secret" which teaches people that good things happen to you when you think good thoughts. It can even be seen in the teachings of Dr. Peter Duesberg, Nobel Laurette, who has fought against the idea that the HIV virus causes AIDS. Dr. Duesberg says that AIDS is an auto-immune disease brought on by excessive drugs use. Gay men get AIDS because they use drugs.

(2) Stress and toxins cause all illness: Not all people with infectious diseases have symptoms, so the theory goes. So the reason some people have symptoms is because of stress or toxins. We need to adopt a simpler lifestyle, and detoxify ourselves, getting rid of the pesticides that have accumulated in our body and the heavy metals by eating organic foods and performing cleansing rituals. This is an interesting idea, but it does not explain why half of the Native American (and the Aztec) population in the United States died of smallpox. They all ate organic food. They cleansed. They lived close to nature.

(1) The Brain-Gut Axis: This shows how a little science can make a lot of pseudoscience. The theory goes as follows: most of the body's serotonin is in the gut, therefor the gut is like a second brain which is linked to your other brain. Gastrointestinal illness (diarrhea, etc.) which can't be readily linked to a pathogen is caused by subtle psychiatric causes, and should be treated with talk therapy. Even if a pathogen is present, IBS scientists are now arguing that it's not the infectious disease causing the symptoms, but rather the patient's defective psyche.

This theory got its start with Freud in the 1800's, who espoused the idea of people as "anal retentive" (uptight and fastidious) or "anal expulsive" (easygoing). The notion was that the way a parent performed toilet training would influence the child's behavior for the rest of their lives.

Much of the modern thought behind this was published in the book, "The Second Brain" (The Second Brain: A Groundbreaking New Understanding of Nervous Disorders of the Stomach and Intestine, Michael Gershon, 1999, Harper Paperbacks) which indicates that you have two brains, which is why you should go to a psychiatrist when you have diarrhea or stomach ulcers

The biggest failure of this theory came in the 1990's, when researchers found that a bacteria was responsible for stomach ulcers, and began dispensing inexpensive antibiotics, and curing patients who had been sick for decades. The discovery almost shut down the field of "Neurogastroenterology". Notwistanding the Nobel Prize awarded to the discoverers of the bacteria, neurogastroenterologists still still resent the loss of this disease (and the grant money), insisting that the antimicrobial treatments would not be necessary if people had undergone the proper psychiatric programs, which frequently required 1-2 years of therapy and showed almost no positive results.

So is the gut a second brain because it has lots of serotonin? Serotonin is neurotransmitter, but it is also used for a half-dozen other functions in the human body. It is an ancient chemical, and algae and bacteria make compounds similar to serotonin. Algae produces melatonin, varying the amount of compound produced based on the time of day, and interestingly melatonin production controls our sleeping/waking schedule. Melatonin is very similar to serotonin. But this doesn't mean your pond is a second brain, or that it can store memories.

The original idea of the gut as as second brain came about because the gastrointestinal tract has muscles that can move independently. This is an impressive feat, but no more impressive than the system that controls contraction of the heart muscle. Yes, a heart will beat by itself even when taken out of the body. This, however, doesn't mean the heart has a second brain, or that people with heart disease should be treated by psychiatrists. Interestingly, the cardiologists have done a better job of keeping out the pseudo-scientists than the gastroenterologists, which is why we treat heart disease with low-sodium diets, exercise, and blood pressure medication instead of voodoo dolls and hypnosis.

Food Allergies or Blastocystis

2010-06-04T14:05:00.000-07:00

Dear BRF,

My wife got sick last year with symptoms on your web site. Her naturopath said she had developed food allergies and order a bunch of tests. She is allergic to wheat, corn, eggs, milk products, pepper and soy. Now she's been on a very restrictive diet for months, and she isn't as sick as she used to be, but still has bad days and good days. I've started getting sick with a lot of the same things. Diarrhea, terrible stomach pains, headaches. I went to a different doctor who did a test and said I have Blastocystis infection. But my wife doesn't believe this is the cause. She says I have multiple food allergies too. Please help! I am only 37 years old, but I feel like I am pushing 80 now.

- ALLERGIC in California

Dear ALLERGIC:

You should check with your doctor for specific medical advice, but I'd like to answer this question because we've heard this before. In our Oregon study, we had four people in one household who believed they had all simultaneously developed multiple food allergies.

In your case, what you have would better be called a "food intolerance" rather than a food allergy. People with food allergies have severe reactions, sometimes including death, when they eat a type of food.

Let me explain it this way. There is another infectious disease called Giardia which is similar to Blastocystis, and is accepted as a cause of disease around the world. People with Giardia infection develop carbohydrate intolerance. That means if they eat sugars or starches, they get diarrhea.

Now suppose you infected a bunch of people with Giardia, and none of them knew about the disease. They may discover that if they stop eating sugar, bread, ice cream, and anything sweet, they have less diarrhea. So they can self-diagnose themselves with multiple food intolerances. But this isn't really the problem.

The real proof regarding Giardia is that once the infection is cured, the carbohydrate intolerance goes away. If this was a true "disorder", it would not go away in all the patients once they were treated for an infectious disease. Antiprotozoal drugs work in about 50% of Blastocystis cases, and those people say the same thing for Blastocystis. Once the Blastocsytis is gone, so are the "multiple food allergies", headaches, etc.

So how plausible is it that you and your wife have multiple food intolerances?

Food intolerances do exist - some people are lactose intolerant. But it's not clear why you have walked the earth for 37 years so far, and would suddenly develop a food intolerance. Intolerances are usually related to a specific antigen in food, and usually involve only one food. About 1% of the population is intolerant of wheat gluten, and this is one of the most common intolerances, so this type of disease is not common. What you are proposing is that an individual has developed about 4 or 5 intolerances, simultaneously, at 37 years of age. What's more interesting, is that when the foods are eliminated, the symptoms remain.

The next piece is the clincher. If you and your wife were identical twins, it might less far-fetched that you would both develop multiple food intolerances in your 30's. But as you are hopefully not related, we are suggesting that two genetically diverse people would simultaneously develop multiple food intolerances in the space of a year.

In our Oregon study, we had one family that was drinking untreated well water, and all of them had developed chronic gastrointestinal illness in the last few years. We tested them and identified the identical strain of Blastocystis in all of them. Physicians had already worked with one of the family members to exclude other infections. Despite this, one member of the household insisted that everyone in the home had developed "multiple food allergies." When people contract Blastocystis infection, they often find that they can get some control over the symptoms by changing their diet, and they self-diagnose themselves with food "allergies." The problem is that such people focus on trying to find the perfect diet, while ignoring the contaminated water they are drinking. And they don't think of themselves as carrying an infectious disease, so they can transmit the disease to others.

-Ken

Full Text of NIH STAR Metrics Announcement

2010-06-03T17:59:00.000-07:00

U.S. Department of Health and Human Services
NATIONAL INSTITUTES OF HEALTH
NIH News
NIH Office of the Director (OD)
White House Office of Science and Technology Policy (OSTP) National Science Foundation (NSF)

For Immediate Release: Tuesday, June 1, 2010

CONTACTS:

Dana Topousis, NSF Public Affairs, 703-292-7750,

NIH Office of Communications, 301-496-5787,

Rick Weiss, OSTP, 202-456-6037,

STAR METRICS: NEW WAY TO MEASURE THE IMPACT OF FEDERALLY FUNDED RESEARCH

A new initiative promises to monitor the impact of federal science investments on employment, knowledge generation, and health outcomes. The initiative-Science and Technology for America's Reinvestment: Measuring the Effect of Research on Innovation, Competitiveness and Science, or STAR METRICS-is a multi-agency venture led by the National Institutes of Health, the National Science Foundation (NSF), and the White House Office of Science and Technology Policy (OSTP).

STAR METRICS will help the Federal government document the value of its investments in research and development, to a degree not previously possible. Together, NSF and NIH have committed $1 million for the program's first year.

"STAR METRICS will yield a rigorous, transparent review of how our science investments are performing," said NIH Director, Francis S. Collins, M.D., Ph.D. "In the short term, we'll know the impact on jobs. In the long term, we'll be able to measure patents, publications, citations, and business start-ups."

Data for the program will come from research institutions that volunteer to participate and the federal agencies that fund them. Information will be gathered from the universities in a highly automated way, with minimal or no burden for the scientists and the university administration.

"It is essential to document with solid evidence the returns our Nation is obtaining from its investment in research and development," said John P. Holdren, Assistant to the President for Science and Technology and Director of the White House Office of Science and Technology Policy. "STAR METRICS is an important element of doing just that."

STAR METRICS is based on a highly successful pilot program that includes seven research institutions. Now the program is being extended to more universities, with 60 already having expressed interest in taking part.

"This project will greatly help science agencies and the research community collaborate in describing and assessing the impacts of federal investments in science and engineering research and education," said Arden L. Bement, Jr., director of the NSF. "We are very pleased to be participating in the STAR METRICS program."

There are two-phases to the program. The first phase will use university administrative records to calculate the employment impact of federal science spending through the American Recovery and Reinvestment Act and agencies' existing budgets. The second phase will measure the impact of science investment in four key areas:

-- Economic growth will be measured through indicators such as patents and business start-ups.

-- Workforce outcomes will be measured by student mobility into the workforce and employment markers.

-- Scientific knowledge will be measured through publications and citations.

-- Social outcomes will be measured by long-term health and environmental impact of funding.

For more information about STAR METRICS, please visit:

The National Science Foundation (NSF) is an independent federal agency that supports fundamental research and education across all fields of science and engineering. .

The Office of Science and Technology Policy was created by Congress in 1976 to serve as a source of scientific and technological analysis and judgment for the President with respect to major policies, plans, and programs of the federal government. .

The National Institutes of Health (NIH) -- The Nation's Medical Research Agency -- includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit .

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Blastocystis Promotes Growth of Cancer Cells

2010-06-02T16:15:00.001-07:00

Blastocystis patients may have an additional problem to worry about. Researchers at the University of Malaysia in Kuala Lumpur have found that Blastocystis promotes the growth of cancer cells in laboratory conditions.

The researchers cultured colorectal cancer cells from the "HCT116" line, a type of cancer cell frequently used in laboratories to study cellular physiology. When the cells were exposed to a compounds present in Blastocystis, they grew more rapidly. Using sophisticated molecular probes, the researchers determined that soluble compounds, or antigens, present in the Blastocystis cells were able to shut off certain immune responses in human cells which limit the growth of cancer cells. By exposing white blood cells to the soluble antigens, the researchers found that the compounds expression of genes that produce IL-6, IL-8, TNF-alpha, interferon gamma, and several genes used in tumor suppression. In many cases, expression was reduced by 50% to 75%. The reduction in expression occurred at a concentration of 1microgram of antigen per milliliter. For comparison, a dosage of 70 mg of antigen would be sufficient to achieve this concentration in an adult weighing 70 kg.

The researchers have previously studies Blastocystis in cancer patients. In those studies, it was presumed that cancer patients may contract Blastocystis due to a weakened immune system. This was the first study to suggest that Blastocystis may play a role in weakening the immune system, and possibly in the development of the cancer.

References:

Chandramathi S, Suresh K, Kuppusamy UR. Solubilized antigen of Blastocystis hominis facilitates the growth of human colorectal cancer cells, HCT116. Parasitol Res. 2010 Mar;106(4):941-5. Epub 2010 Feb 18.PMID: 20165878

Taiwan Researchers Link Blastocystis to Respiratory Problem in Long-Term Care Facilities

2010-06-02T13:50:00.001-07:00

Researchers at the National College of Nursing in Taipei, Taiwan have linked Blastocystis infection with respiratory distress in long-term care facilities. The study, which included 552 residents of a facility, found that individuals with Blastocystis infection were much more likely to have undergone in-place tracheotomies. Tracheotomy is a painful procedure in which a hole is cut in a patient's trachea to facilitate the insertion of a tube in order to prevent airway obstruction. The procedure can be associated with scarring and loss of speach. Professor Stephen Hawking lost his speech due to a tracheotomy after contracting pneumonia.

In addition to studying 552 residents, the project investigated the infection rate in the facility's 161 care workers. The study found that foreign care workers in the facility were infected at a rate of 12.2%, while domestic care workers were infected at a rate of 4.6%. The infection rate in residents was 2.7%.

Blastocystis infection was positively associated with lower educational level and older age.

Because of the relatively high infection rate of care workers, the study suggested that transmission of Blastocystis infection from care workers to residents could be a potential source of morbidity to the patients. The study specifically noted that appropriate preventive measures should be implemented to older care workers with lesser educational attainment in order to reduce the risk of Blastocystosis infection.

References:

Su FH, Chu FY, Li CY, Tang HF, Lin YS, Peng YJ, Su YM, Lee SD. Blastocystis hominis infection in long-term care facilities in Taiwan: prevalence and associated clinical factors. Parasitol Res. 2009 Oct;105(4):1007-13.

Blastocystis Stunts Growth in Children

2010-06-02T13:40:00.000-07:00

Researchers at Adnan Menderes University in Turkey have found that Blastocystis infection may stunt growth of children. The 2007 study, published in the Medical Science Monitor, examined 178 children with and without Blastocystis infection in Turkey. Both body mass index and other body measurements were smaller in Blastocystis-infected children.

This finding parallels similar studies of Giardia infection in children, which showed that this protozoal infection also produces stunting of growth. Additionally, Giardia infection has been correlated with lower IQ scores and results on standardized tests. These findings, in conjunction with others, influenced the US Congress to declare Giardia to be pathogenic in the 1980 Clean Water Act.

A similar study, published in the March 2010 issue of the American Journal of Human Biology, reported similar findings in children from Argentina infected with intestinal parasites. The children were found to have shorter limbs, lower than normal arm circumference, and less muscle mass. In that study, 39% of the children with Blastocystis, Strongyloides, and hookworms were found to have stunted growth.

Blastocystis is a gastrointestinal parasite transmitted through contaminated food and water. It is the only parasitic infection with a prevalence above 10% in many developed countries. Physicians may attempt to diagnose and treat the infection, however multiple reviews published by public health and clinical scientists in the last several years have found that the diagnostics and treatments are unreliable, leaving most patients with long-term infections which are undiagnosed. Many governments have declined to take any action to support treatment of patients, effectively deferring the burden of illness to regional doctors and the families of those infected.

Cognitive impairment has been noted as a symptom in adults as well, often described as "mind fog." In a study published in 2009, the Blastocystis Research Foundation interviewed a number of US families concerning their experience with the infection. The researchers found that in all families where members had Blastocystis infection, parents had noted the onset of learning disabilities with the infection, including ADHD in mils cases, and autism spectrum disorder (ASD) in more severe ones.

References:

1. Ertug S, Karakas S, Okyay P, Ergin F, Oncu S. The effect of Blastocystis hominis on the growth status of children. Med Sci Monit. 2007 Jan;13(1):CR40-3. Epub 2006 Dec 18.PMID: 17179909

2. Zonta ML, Oyhenart EE, Navone GT. Nutritional status, body composition, and intestinal parasitism among the Mbyá-Guaraní communities of Misiones, Argentina. Am J Hum Biol. 2010 Mar;22(2):193-200.PMID: 19642206

Development of Polio Vaccine a Failure by NIH's New Standards

2010-06-02T12:00:00.000-07:00

On June 1, 2010, the US National Institutes of Health released the criteria by which it will be reviewing the performance of scientific efforts funded by that agency. As the world's largest medical funding organization, the NIH expects to distribute almost $31 billion dollars in 2010, most of it going to professors at US Universities.

The agency has previously been criticized as a "jobs program for scientists" due to its willingness to distribute funds to Universities for projects which fail to make any demonstrable contribution to the public health. This week, the agency published formal guidelines which apparently confirm this criticism. In the new evaluation system, the success of grants will be measured by the following criteria:

1) To what extent has the grant created more work (jobs) ?

2) To what extent has the grant created patents and spun off new businesses?

3) Is the research from the grant being cited by other authors?

4) What is the social impact and environmental impact of the research?

Remarkably, the word "health" does not appear anywhere in the NIH's new evaluation system.
Relieving the burden of disease is now the number 4 priority, and is ranked next to environmental impact. As such, curing a disease is of comparable importance to reducing paper clip usage and recycling old phone books.

This represents a new direction for medical research in the United States, which historically has been focused on diagnosing, curing, and preventing disease. The focus on addressing disease has produced what has described as some of mankind's most significant accomplishments - such as the eradication of smallpox, and the near eradication of polio. Remarkably, under the new NIH criteria, those efforts would score poorly in research value.

For example, the near eradication of polio from the United States has produced a loss of many University jobs, as researchers are no longer needed to study the disease. Polio epidemics used to rage through towns yearly, leaving many children crippled and surviving only in iron lungs. Those children provided ready subjects for Universities to study and justification for larger research budgets.

Additionally, Dr. Jonas Salk, the inventor of one of the most widely used polio vaccines, refused to patent the vaccine. "There is no patent. Could you patent the sun?" he reportedly said in an interview. As such, the Salk vaccine would score poorly on the NIH's second criteria, which requires business generation and patents. It is not clear that the Salk vaccine produced research papers which were frequently cited by other scientists, missing the NIH's third criteria. The Salk vaccine may earn some points on the fourth criteria - social value - as it did help eradicate one of the world's most serious viral diseases. However similar points could be awarded based on environmental impact, so another research effort coupled with an office paper recycling project may actually score higher than the Salk vaccine.

Blastocystis and Easter Island

2010-06-01T21:27:00.000-07:00

Everyone has seen the large heads carved from stone on Easter Island. These heads are an architectural and engineering marvel - especially considering the stone used to carve them came from miles away on the island. The story behind the heads isn't a happy one, and it can tell us about what is happening to the United States, as Blastocystis infection spreads through the population.

Easter Island was home to a variety of tribes who believed that carving the heads, or Moia, would solve their physical problems. The tribes competed with each other for scarce resources on the island, and fought wars against each other as well. The heads had to be placed on the shore, but the stone for carving them was miles away. So the tribes cut down trees to use to roll the stone blocks to shore. When harvests failed, tribes went to war, and more trees were cut down to make more statues. That lead to deforestation and erosion, which lead to fewer resources, more wars, and the need to build more Moia. The tribes that made the Moia eventually drove themselves into extinction.

Blastocystis was a relatively rare infection in the United States until the mid-1990's, when infection rates skyrocketed. By 2000, almost 1 in 4 samples coming from California were testing positive for the infection. Unlike E-coli, salmonella, and some other foodborne infections, the disease does not go away after a few weeks, months, or years. Many of those who were infected in 2000 will be sick until the day they die unless they are treated. But there is currently no reliable treatment available in the US, and the NIH has opposed using any funds to identify such a treatment.

To understand what their opposition is, in their June 1, 2010 announcement, the NIH indicated that its primary mission is spending money to create employment at Universities and produce patents and new businesses . So like the tribes of Easter Island, the NIH believes that patents and businesses will keep the US population healthy. The NIH indirectly spends hundreds of millions of dollars a year on Blastocystis infection, but it goes to physicians who start research groups that make up new names for the illness seen in Blastocystis patients. They call it microscopic colitis, irritable bowel syndrome, leaky gut syndrome, dysbiosis, or inflammatory bowel disease. They then develop treatments that do not cure the disease, but rather have to be re-applied throughout the patient's life to control symptoms. They do not do any work to limit the vectors that are spreading the disease, so these patients can go on to infect others in the community.

Based on the numbers from developing countries, eventually about 50% of the US population will be infected with Blastocystis. At that time, 30-40% of the US population will have chronic diarrhea, abdominal pain, and auto-immune diseases. Many will be unable to work, and will have to be supported by government aid or by their families. Many children who contract this will be unemployable for their entire lives. Seniors who contract the disease will incur astronomical medicare bills.

In fact, if their goal is to create employment at Universities, what the NIH is doing right now - refusing to spend any money to control or cure the infection. By letting the infection spread, the NIH will be able to justify higher budgets to Congress. The problem is that the money comes from an economy that that can't continue with this level of chronic illness. The US population has not seen this high of a level of protozoal infection in over a century. The only countries today with similar levels of infection have economies that provide a much lower standard of living for their population. They certainly don't spend $22 billion on health care research.

Unfortunately, like the tribes on Easter Island, the answer from the NIH is to spend more money. Build more Moia.

Perhaps the next tribe of people who inhabit this island will be wiser.

-Ken

Two years after the NIH petition...where are we?

2010-06-01T20:02:00.000-07:00

In June of 2008, BRF submitted a petition to the NIH signed by almost 100 Gulf War Veterans, Peace Corps Volunteers, Physicians, Researchers, and patients. The petition asked the NIH to resume research into what has become the country's most prevalent protozoal infection, Blastocystis.

Blastocystis is a single-celled organism transmitted between humans (and between humans and animals) by contaminated food and water. It lives in the lower gastrointestinal tract, where it will produce chronic abdominal pain, diarrhea, fatigue, skin rashes, joint pain, and neurological symptoms in 50-80% of people infected. The tests that are used in the United States to detect the organism, and the treatments used here have been shown to be unreliable. Most people infected will experience long-term illness without any idea of why they are sick.

Blastocystis was relatively rare in the United States until the mid-1990's, when the frequency of occurrence in laboratory samples began rising from about 2.5% to its current value, which has been recorded as high as 22% in California. In the 1980's and early 1990's, the US actually had the most sophisticated program in Blastocystis research, which was run by NIH researcher Dr. Charles Zierdt. However, the NIH ended all research in the United States in 1995, after several physicians from a Health Maintenance Organization in California objected to publications showing Blastocystis was creating illness. They insisted that these patients should be diagnosed with irritable bowel syndrome (IBS), which is considered a mental disorder.

In the 15 years since the NIH shut down all US research, over 100 papers have been published from public health agencies and scientific organizations in Europe, the Middle East, and Asia identifying Blastocystis as a problem. Initially, the groups have been cautious about contradicting US policy in this area, but they are becoming increasingly confident in their findings, and are finding ways to work together to address the problem in their citizenry.

One question is, "Why has the NIH shut down all research into the country's most prevalent protozoal infection?" The Federal Government funds research into an enormous variety of things - butterflies, clouds, automobiles,

We asked this question in 2008, with our petition. The response from NIAID Deputy Secretary Hugh Auchincloss can be read here.

So two years later, the NIH's budget has swelled - President Obama gave the NIH an addition $10.4 billion dollars in 2009. Did this help the NIH?

In fact, since 2008, not penny been spent on the country's most prevalent protozoal infection? Blastocystis is the only protozoal disease you will find in 10-20% of the US population today. It is the only prevalent protozoal infection in the US without a reliable treatment or diagnostic test. The NIH's own database, which indexes medical journals around the world, shows we are approaching over 1000 publications on Blastocystis (almost all of which confirm that it is causing this illness), the NIH will not spend a penny on research.

Not $0.01

In trying to answer the question, it's helpful to understand the NIH is no longer an agency dedicated to the public health of US citizens. It is first and foremost an agency that serves US researchers. Almost all of the money given to the NIH is distributed to University professors in the forms of grants. Professors use the money to pay their own salaries, buy equipment, and study things that interest them. The decision as to how the money is spent is made by peer review groups of University professors.

The NIH is the only federal agency which has outsourced its mission, and then appointed the contractors to oversee how the money is spent.

This sounds like it a good idea in theory, but what guarantee exists that the funds will be distributed in a way to maximize the health of the US Population? There are now a dozen infectious diseases emerging in the US. Nobody keeps a list of them, matches resources spent to the need. Other infectious diseases are developing antibiotic resistance. There is no system to make sure that somebody is developing new treatment for these. The death rate for MRSA now is comparable to that of AIDS.

To understand the problem, suppose all the University professors in the United States decided to study Origami instead of infectious diseases. They could distribute the billions from the NIH between themselves. Lots of money would be spent, but large areas of public health would be neglected.

Why Is My Family Sick?

This June 1, 2010 press release from the NIH can help you understand why your family has developed chronic illness, and why our medical system is in steady decline. In it, the NIH is developing a system for assessing the impact of the grants it writes. This is a good thing, of course, and one wonders, how the agency has been writing over $10 billion in grants a year without such a system (can you imagine a private company spending $10 billion without knowing if it did any good?)

But the press release still shows the problem of the NIH - they view themselves as a kind of trade organization for medical researchers. Mainly, they are different from agencies like the FBI, NSA, DOT, and FDA. Those agencies have a specific role in protecting the public health and safety, and they are expected to assess the needs, and then spend accordingly. At those agencies, the US citizen is the customer.

At the NIH. the US researcher is the customer. If the NIH were to distribute $10 billion to sequence the human genome, and every US citizen developed long-term diarrhea from Blastocystis and then died of complications of MRSA, the NIH could still pat itself on the back for "developing the careers of US scientists."

In the NIH's press release, the program indicates that:

The first phase will use university administrative records to calculate the employment impact of federal science spending through the American Recovery and Reinvestment Act and agencies' existing budgets.

Can you imagine any private company developing a system to measure its own performance where it lists the number of people employed as an attribute? What if Home Depot's annual report said, "We have decided to forget about customer service, and grade ourselves on how many people we are employing."

Many private companies actually take the opposite approach - they measure their ability to achieve specific objectives for the customer with fewer people.

This gives a hint to what the NIH is really about - it has become a large patronage system, similar to the systems setup in Chicago in the 19th century. In that system, government agencies garner support from the population by giving away as much money as possible, rather than by fulfilling a public purpose.

But wait - there is a second phase to the system. Maybe we will look at things like, "Do we have expertise in all infectious diseases that are prevalent in the United States today? Can a patient walk into a doctor's office with one of these diseases and reasonably expect a correct diagnosis, and a treatment that will cure the infection in 90% of the cases? Do we have research efforts in place which are monitoring the rate at which infectious diseases are spreading?"

OK, here are the criteria evaluated in the second phase:

-- Economic growth will be measured through indicators such as patents and business start-ups.
-- Workforce outcomes will be measured by student mobility into the workforce and employment markers.
-- Scientific knowledge will be measured through publications and citations.
-- Social outcomes will be measured by long-term health and environmental impact of funding.

Great - "social outcomes" is the last thing mentioned, and is listed along side environmental impact. So whether the research actually cures somebody is of comparable importance to whether University employees are recycling their post-it notes.

It's absolutely fascinating to realize that this thinking is so ingrained in the NIH (and the University researchers), that it isn't even hidden in their press releases.

In my opinion, the best way to save the public health would be to replace NIH's management with members from private industry, who have experience in turning around bankrupt companies. That's what the NIH has become - a morally bankrupt institution, and the greatest treat to the public health of US citizens in a generation.

One very simple way to develop a set of metrics would be to re-orient the agency from thinking about how much money it is sending researchers to thinking about how it is impacting patients.

For infectious diseases, perhaps we could make a simple list as follows:

1. How many people in the US are infected with it today?
2. What is distribution of per-patient costs (medical costs and other costs) for the infectious disease?
3. If a patient has the infection, can they enter a doctor's office, and reasonably expect to receive the correct diagnosis and a first-line treatment that will cure the infection in 90% of the cases?
4. If cases are undiagnosable, what research can we sponsor to make sure patients can be diagnosed?
5. If cases are untreatable, what research can we sponsor to make sure patients can be treated?
6. What research can we sponsor to prevent infections?

-Ken

Q&A: Wouldn't it make sense for the federal government to develop a treatment for Blastocystis?

2010-06-01T19:10:00.001-07:00

Dear BRF,

On your web site, you included a story from a reader who is on disability due to Blastocystis infection. Why doesn't the government do something? It doesn't make sense they would be willing to pay money for disability, but won't do anything to help the patients.

- Confused

--

Dear Confused,

I can see your confusion. Why spend money on disability payments without spending any money to cure the disease? You're mistake is thinking that Washington would approach this in a logical manner. In fact, they way they work is in the most illogical manner imaginable. This usually results in the largest amount of money possible being spent, and patients staying the sickest for the longest amount of time.

One of the worst developments is that medical researchers pursuing pseudoscience can now get multimillion dollar grants from the NIH and Congress by blaming stress or toxins for the symptoms. The situation is like ENRON, where some sharp people figured out how to use the federal system to make a good living at the expense of the US public.

The good news is that the same disease is causing these problems all over the world, and researchers in a dozen countries are now working together to find out what to do about it, mostly without the help of the US medical researchers. So his best chance for getting cured will probably come from research done in Europe, the Middle East, or China.

-Ken

Follow the money

2009-07-27T07:44:00.001-07:00

I got an e-mail from a psychiatrist the other day who asked me to take him off my mailing list. He was angry that I was suggesting that most cases of chronic lower GI disease in otherwise healthy US adults are being caused by an infectious disease. I've gotten this criticism before, from doctors who complain that I'm offering a quick fix for a complex problem.

Antibiotic treatments are, in fact, a quick and inexpensive fix for diseases. That's the problem. It's been almost impossible for our organization to get members of the medical community interested in addressing this problem. Drug companies invest very little in the drugs we need, because they usually only get used once by a patient. On the other hand, drugs that manage chronic conditions, like AIDS or high blood pressure get used over and over. These are block busters. The same is true with Viagra.

In medicine, there is an enormous lack of interest in identifying what the least expensive and most effective solution is, and neither consumer groups nor government agencies have taken any action to address this. This problem isn't limited to treating epidemic GI disease. The New York Times published an article on a new treatment for an enlarged prostate, which costs $100,000 and uses a piece of equipment the size of a football field. There is no evidence the treatment is any more effective than just watching and waiting (cost=few thousand dollars). And remarkably, nobody has really done any detailed studies on how good this treatment is before building the equipment.

This is the big difference between medical spending and spending in other areas of our economy. In engineering, we're always trying to do more with less. In medicine, how much things cost (or whether they even work) isn't a big concern because these factors don't impact the bottom line of the organizations that make decisions about spending.

When my family got sick with this disease in 2003, doctors spent over $4000 on tests before we identified the infection. And our subsequent medical and disability costs run into the tens of thousands. This is common in this disease - patients get endoscopies, colonoscopies, MRI's. Some patients wind up with higher expenses, especially once they start the surgeries. The cost of the diagnostic that would identify this - the FITC stain we worked with a California company to develop - usually sells for less than $20 (though the lab may charge you $80 to do the test).

When I say it is important to deal with Blastocystis properly, the response is that since it does not kill lots of people, it is not an issue. But we need to consider more than mortality in diseases, especially chronic ones. In areas of the country where Blastocystis is endemic, it is likely that a large percentage of the cost of employing people is going to medical costs associated with this disease. In Oregon, the average income is around $40,000 per year, and when you have to pay for $25,000 gall bladder removals, and frequent doctors visits (at $130 each), things add up. In our original statement of goals, we said we wanted patients to get a reliable diagnosis 97% of the time with one visit to the doctor, and a reliable treatment 90% of the time on the first visit to the doctor. So what's good for the patient isn't necessarily what's good for the medical system, in the short term, but in the long term we aren't going to be able to support this level of medical spending. Corvallis just opened a new endoscopy center.

This hasn't impressed anyone in the medical community yet. I don't think this is a conspiracy, but at the end of the day, the issues that show up as important on a doctors list are those that impact their bottom line. These are things like the cost of malpractice insurance, medicare reimbursement rates, and insurance reimbursement policies.

Medicine and heresy

2009-07-26T18:58:00.000-07:00

After I started BRF in 2006, one of the first meetings I had with a public official was with Representative Sara Gelser, who served as Corvallis' representative to Oregon's State Legislature. Fortunately, she had experience with what it takes to move the medical system. One of her sons was born with Fragile-X syndrome, a genetic condition that carries with it a number of health problems. She was also a member of Oregon's Health Policy Committee in the Legislature.

On our lunch meeting at Sam's Station, she asked a question that I've heard repeated by many scientists since then. Why do doctors and public officials fight scientists when it comes to addressing Blastocystis as an infectious disease. A 1996 review by Stenzel and Boreham began:

Despite more than 80 years of debate since the first accepted descriptions of the genus Blastocystis, not a single issue about this organism has been satisfactorily resolved.

Seven years later, in 2003, Oregon was in the middle of an epidemic of Blastocystis infection. That's the year my family contracted this, changing our lives forever. The medical community had made little progress in diagnostics or treatments by this point. The result was that what could have been a routine diagnosis and treatment has turned into a chronic disease which has cost our family and my employer well into the five figures.

Repeating History

I began calling around to different researchers asking them what the problem was. One call to the Oregon Health Science University (OHSU) was very informative. I spoke to Professor Ernest A. Meyers, who performed a great deal of the pioneering work on Giarida, another gastrointestinal protozoan, in the 1960's. He told me about how the medical community would not accept that Giardia would cause disease, and how there was an epidemic of Giardia infection in Portland in the 1950's due to contaminated water. Over 50,000 people became sick, but no medical journal in the United States would print the story. This was years after GI's had returned from World War II with Giardia, and had experienced chronic GI illness which subsided once they were treated with antiprotozoals for malaria. This is remarkably similar to what we've found in our research, which has identified Blastocystis infection in Gulf War Veterans (who are still sick), and linked the same organism chronic illness in civilians. The denial of Giardia continued until the 1980's, when Congress finally took action and classified Giardia as disease causing in the Clean Water Act. All told, Giardia was discovered in the 1500's, but it took over 300 years for the medical community to accept this as disease causing.

And this wasn't the only case. The medical community also fought against identifying Vibrio choleae as the cause of cholera, even though millions were dying of cholera in the 1840's. I wrote about this in a letter to Lancet Infectious Diseases, "Emerging infectious diseases are not always obvious" The winner of the 2005 Nobel Prize in Medicine, Dr. Barry Marshall, wrote about his experience in identifying the bacteria Helicobacter pylori as the cause of stomach ulcers. He turned from a researcher to a medical historian, and uncovered one of the longest-running efforts which suppressed information about the role of an infectious disease in causing stomach ulcers. Researchers had identified this as early as 1965, but nobody would publish their papers, and physicians were even prosecuted for curing patients of stomach ulcers in the 1960's using an antibiotic treatment which got Marshall the Nobel Prize in 2005 (he re-discovered this treatment independently).

In "Helicobacter Pioneers", Dr. Barry Marhsall recounts one of the most
egregious examples of scientific malpractice, in which the medical community
delayed an antibiotic-based cure for stomach ulcers by over 20 years.
This photo shows Dr. John Lykoudis on the steps of the courthouse after
he was prosecuted for treating stomach ulcer patients with antibiotics.

Stomach ulcers are no joke. In my parents time, people with this disease lived a miserable life. Ulcers often required surgery, and about 20% of the people who enter the surgery room for ulcer surgery don't come out alive. The annual death toll from ulcers was about 6500 in the United States before Marshall's therapy. My parents had friends who dealt with this for years, and had to make frequent trips to the hospital for the disease and all its complications. Today, Blastocystis patients have the same experience.

Medicine and Heresy

All of these pathogens - Giardia, Helicobacter pylori, Blastocystis, and cholera can be shown to make animals sick with a little bit of effort. With this kind of history, you have to wonder what the medical community is thinking. Mainly, why don't they just run some tests and

There are many answers to this, and I'll put one interpretation down here. In my day job, designing integrated circuits, I use science all the time. But the use of science in medicine is a new thing. And so is the idea that microorganisms cause disease. The field of medicine is thousands of years old - the Kahun Papyrus, one of the earliest medical texts, is over 3800 years old. That means people have been trying to cure other people of diseases (and charging them for it) for thousands of years. But infectious disease theory wasn't developed until the mid 1800's. And many of the most important GI pathogens weren't discovered until the last 20 years. So that means that for 3760 of the last 3800 years (98.94%), physicians had no idea what was causing most gastrointestinal illness. But if you asked any of them what was causing illness, they would probably give you an answer, and they would be very confident of its accuracy, as they dispensed potions and amulets.

Most doctors I have met would appreciate more science in this area, but there is a minority which sees the use of science in medicine as undesirable. These people come from various schools of New Age thought, and their argument can be summarized as follows. Microorganisms are everywhere, and some people get sick from them, and others do not. The reason people get sick is complex, bordering on metaphysical, and treating these people with antibiotics is a quick fix. People become sick because they are not living a correct lifestyle, and they need to develop a long-term relationship with a practitioner of one of the New Age arts (possibly many) in order to become well.

This will probably sound good to a lot of US readers, because this school of thought has been developed in the United States. It is an offshoot of the Christian Science movement. Ironically, Christian Science has nothing to do with science or mainstream Christianity. It is a group of teaching based on texts published by Mary Baker Eddy in the late 1800's, which say that illness is due to a lack of faith, and should be treated with prayer. My family cares for a relative who is unable to walk today because she had the misfortune of being born into such a household which would not take her to the doctor when she broke her foot at 15. Modern day Christian Scientists will not vaccinate their children, and this has lead to outbreaks of diseases which we haven't seen in the US for decades.

The philosophy has gained a great deal of credibility in the US. The IRS now recognizes Christian Science practitioners as reimbursable under Flexible Spending Account rules. Interestingly, practitioners of Scientology are not reimbursed, and neither are faith healers.

The NIH has similarly been swayed by this idea. In 1995, the NIH lead the world in Blastocystis research. But possibly in response to objections by a small number of health care providers from California, the NIH stopped its program and (based on what we have been told) began telling US researchers there was no proof Blastocystis was causing diarrhea. From 1995 to the current day, the NIH has not sponsored one researcher to study Blastocystis in US patients. The California health care workers indicated that Blastocystis patients should be diagnosed with 'irritable bowel syndrome' which is kind of a psycho-somatic diarrhea.

BRF is the only US organization researching infectious diseases as a cause of unexplained GI illness in the US. The NIH does sponsor about $15 million in research every year into IBS, and almost all of this is focused on the Christian Science idea that disease is the product of the mind.

Here is one example, the target of a $1,007,873 grant to the University of Maryland:

According to Chinese medical theories, the most common cause of IBS is the "stagnation of liver energy attacking the spleen and resulting in dysfunction of the transportation and transformation function of the spleen". This is a condition characterized by a syndrome of recurrent abdominal pain, diarrhea and psychological conditions such as depression and anxiety. Based on the principle of TCM, as mentioned in the Yellow Emperor's Inner Classics, the most ancient TCM medical book, one should "use herbs to treat the illness internally and acupuncture to treat externally

I should note that this review should really refer to traditional Chinese medicine, meaning a subset of Chinese medicine which is distinct from China's modern scientific infrastructure. Scientists from China's Center for Disease Control were co-authors on our last review, which essentially said that Western 'experts' had screwed up the science of Blastocystis so badly as to produce a group of new diseases, which include IBS. China has also performed some of the largest and most sophisticated studies in Blastocystis, and Asia (including Singapore, Japan, Malaysia, and the Phillipines) remains the region that produces the most advanced studies in this area.

Caught in the Middle

GI pathogens aren't the only organisms targetted by the new 'wholistic science.' Last year, I wrote an article in Gut Reaction, a UK-based journal, which compared some of the work being done in Blastocystis to the work done in Helicobacter pylori (Gut Reaction, Issue 69, Spring 2008) I had no idea that people were angry about H. pylori. One of the advisors to the journal shot back, Nick Read (MD), shot back:

We have known since the birth of civilization how people weakened by malnutrition and poverty are particularly susceptible to illness. The same applies to people undermined by emotional distress. The dramatic potential of the Tubercle bacillus
to devastate the health of young men and women crossed in love is a dramatic theme of many novels of the nineteenth and early twentieth centuries.

So now tuberculosis is a psychsomatic disease. Bacteria doesn't kill people. Bad thoughts kill people. Perhaps we can throw out all those antibiotics and create 'Irritable Lung Syndrome' to join 'Irritable Bowel Syndrome.' Yes, many people carry TB asymptomatically. These people are like Typhoid Mary - they are gifted with random genetic mutations that confer immunity to this disease. The bacteria that causes TB generates a chemical that mimics a hormone that the body uses to turn off the immune response. By turning off the immune response, TB can make itself more successful by becomming a chronic infection. But in some patients, this backfires, and the immune system is turned off too much, and the disease proliferates. People who do not have symptoms produce lower levels of this hormone (IL-10) naturally. It's not magic. It's not stress. It's science.

In the rest of the journal, Dr. Read goes onto advise patients with chronic diarrhea of the value of "Neuro-Linguistic Programming" which is apparently something like EST, but much more expensive. NLP is a big money-maker now in the alternative medical community, no doubt because it requires a long-term committment at $100-$200/session. This advice is identical to the advice that "neurogastroenterologists" were giving to stomach ulcer patients in the 1980's: blow your family's life savings on long term psychotherapy. When H pylori was discovered, these people did not give up. They just moved down the gastrointestinal tract and picked another poorly understood disease. Never get an infectious disease whose patients are being studies by psychiatritsts.

This is what you need to know. Medicine is created by two forces. The scientists, who studies things in a lab, develops treatments, tests them, demonstrates them in animals, and integrates the findings into a larger understanding of physiology. The other guys make stuff up, and sell amulets and potions. Their tradition is much older. They've been selling it for thousands of years. It's not going to go away just because we have the internet and cell phones. But those amulets really sucked when the Europeans brought smallpox to the United States. They aren't doing much better with Blastocystis, abdominal pain, and diarrhea. At least the medicine men did not charge $500/hour.

Cherry Picking

2009-07-03T18:41:00.001-07:00


	Cherry picking is the act of pointing at individual cases or data that seem to confirm a particular position, while ignoring a significant portion of related cases or data that may contradict that position.

In April of 2007, I testified to the Oregon State Health Policy committee in Salem, Oregon on the impact Blastocystis infection in Oregon. We were supporting a bill, HB 2699, that would have required the state to report the number of people getting sick, the same way they do for other infectious diseases that are diagnosed and treated by doctors. I had a petition signed by patients and two board certified gastroenterologists, and multiple family doctors. The local newspaper had done a story on families impacted by this. I had videotape from two patients. Everybody had been healthy prior to infection, and now their lives were a succession of doctors visits. Both videos were from long-time State of Oregon employees working in positions of responsibility (teachers), so I thought that might count for something with the legislature.

The State of Oregon's Epidemiologist opposed this effort. But he didn't think enough of Corvallis to come himself. He sent the State Veterinarian to testify. I've read that Corvallis has one of the highest per-capita rates of advanced degrees in the country. But apparently in Salem they think we're a bunch of cows. deBess brought in a folder about 8 inches thick which he said was full of studies that showed Blastocystis was harmless. After the testimony, I asked his office for a list of those studies. They never sent it. They have not returned repeated phone calls, e-mails, or written letters. This, despite the fact that their office received instructions from Oregon's Health Policy Committee to work with BRF on this issue.

So deBess testified for 45 minutes, rattling off every study he could find that suggested Blastocystis did not cause illness. I was really surprised that this office could not find a single study that suggested Blastocystis could cause disease. I had no trouble finding them - in fact, the NIH's Pubmed database is full of them. His office is headed by an epidemiologist, they work on this full time, and presumably have much better investigative skills than someone like me. But they were incapable of finding a single study that suggested Blastocystis could cause disease. When a member of the Health Policy Comittee pressed deBess, he did admit that maybe there were some studies from the Middle East that contradicted his testimony, so apparently they knew about the studies, but did not mention them.

In 2007, I decided to organize an effort to count up all the studies. I wanted to publish a list of the studies that said it caused disease, and those that said it was harmless. The group of scientists I organized included staff at the US Center for Disease Control, China's Center for Disease Control, the World Health Organization, the Pasteur Institute, the Department of Defense, the Scottish Parasitology Laboratory, and other organizations. The paper was authored by 11 scientists in 8 countries, and peer reviewed by two additional scientists. So I think it is a reliable source of data. We also published all the raw data, in case anyone wants to check our work. We found that 85% of studies reported did show Blastocystis causing disease.

Dr. deBess indicated he got his information from the CDC. At the time, CDC's fact sheet listed 5 studies, all of which hold the minority opinion. Statistically speaking, the chances of coming up with five studies by random selection, all of which support a 15% minority opinion, are about 1 in 13,168 (=1/0.15^5) In the testimony to the Oregon State Legislature, Dr. deBess indicated that the CDC's position was that Blastocystis does not cause illness.

The people writing these reports were only reporting part of the story. In my full-time job as an engineer (which pays for a lot of this research), I could get fired for this. People make mistakes all the time in high tech, but you usually don't get fired for that. You can get fired for distorting information. Apparently, this kind of thing goes on in medicine a lot, and it even has a name - "cherry picking." If you are willing to do this, you can prove all sorts of goofy things. For example, there's a group of people arguing that HIV does not cause AIDS, and one of the techniques sited by people reporting on their activities is ....'cherry picking'.

Cherry Picking is pernicious because it produces the appearance of due diligence, while driving public officials to reach an unsupported conclusion. For many years, the government of South Africa would not accept HIV as a cause of disease because of this effort. In the United States, this happens too. Last year, I organized a petition to the NIAID which was signed by over 100 scientists, physicians, patients, and researchers. It asked the NIAID commit to funding Blastocystis research in the US, something they have not done since 1995. We even had a letter from Congressman Richard Neal (D-mass). The NIAID's response was that the pathogenicity of Blastocystis is questioned, so no commitment to funding will be made.

To put things in perspective, when only recent studies are considered, about 5% of NIH's PubMed indexed studies report that Blastocystis can not make people sick. In contrast, the New York Times reported in July 2009 that about 6% of the US population believes the moon landing was a hoax. So if other organizations acted like the NIH, we would shut down NASA, and say that "experts question the feasibility of manned spaceflight." In fact, if the NIH were to be consistent, it should also shut down AIDS research, since some researchers say HIV is harmless.

What about that thick folder? It turns out that there are some researchers who deny Blastocystis can cause any kind of illness in anyone. We found that studies finding Blastocystis was non-pathogenic were usually very old (more than 15 years). If you look at the CDC informational page (January 2008), you'll it excludes any study published after 1995 - that was around the time Blastocystis research began taking off, and researchers began understanding the mistakes that were made in the 1980's.

In the review article, we mapped out the studies that found Blastocysits to be disease causing and harmless. You can see the plot in the "Supplementary material" for our study. But it took a long time to plot every point by hand on a map, and you can't zoom in. I thought this would be a nice application for Google maps, so you can now map this for yourself with that tool on BRF's web site.

Here is a current version of that image with Google Maps:

Introduction

2009-07-03T13:21:00.000-07:00

This is the introductory entry for my blog, "The Journal of Forbidden Research." I'm going to try to explain, in my somewhat inarticulate way, what this blog is about, and what the Blastocystis Research Foundation is about, and why it matters.

In my day job, I work at a high tech company in Oregon. At nights and on weekends, I'm the founder and Vice President of Research of the Blastocystis Research Foundation. How did I get both positions? My family moved to Oregon in 2000 so I could take a new high tech job. By 2003, we were all sick. Doctors could not figure out what was going wrong, even after thousands of dollars of tests. Eventually. we discovered that my family had been infected with Blastocystis.

Blastocystis is like Giardia. It's a single-celled organism that infects the lower gastrointestinal tract. People get infected with things all the time, but Blastocystis is different. But it doesn't go away after a few weeks. Or after a year. Or 20 years. And there is no reliable treatment. In the last 15 years, it has become epidemic in the United States. The public health community is taking no action on this.

Soon we started hearing about all the people in my neighborhood who had developed unexplainable GI disease. Doctors told us the disease had always been present in the Willamette Valley. But the symptoms had gotten worse in the last 10 years, and the disease became more difficult to treat. Just my luck, I apparently moved to Corvallis in the middle of the epidemic.

I didn't understand why the medical community was incapable of dealing with something like this. That is, they knew people were getting sick with unexplainable GI disease. But instead of insisting that work be done to explain it (and deal with it), doctors were just side-stepping the issue. They'd just order more tests, prescribe more drugs, or tell patients they had IBS (irritable bowel syndrome). Patients were running up five and six figure medical bills for the problem for a disease which should require one office visit and a prescription. But because nobody would admit there was a problem, ordinary people are being turned into career patients, and physical (and financial) basket cases. There is simply no way the system can take the kind of medical bills that patients are running up.

Identifying an epidemic infectious disease is an unpopular activity. In fact, when I formed BRF in 2003, there was not one researcher who would go near Blastocystis in the United States, because of the political fallout. At work, we solve technical problems all the time. So BRF is my idea about how you can solve a medical problem using systematic investigative procedures.

And what's the blog for? I setup this blog because I want to keep the web site as the "face" of BRF, which is an organization which represents a research community. This blog is my space, where I can include my opinions, ideas, and log the progress of the research effort.

Best Regards,

Ken