An interview with the Blastocystis Research Foundation director, Ken Boorom
The microorganism Blastocystis hominis has been an issue of some controversy for as long as I’ve been in the field, whether it has been over its taxonomic classification or issues of pathogenicity and treatment.
It is an organism that I personally have reported on numerous parasitology stool exams over the years and have always considered it relatively common based on this experience.
Well, I came across the Blastocystis Research Foundation (BRF) through an email and found a whole world of people suffering severe chronic infections that I never knew existed. In addition, I discovered that almost all research on this parasite is coming from overseas scientists with next to nothing happening here in the United States.
I contacted BRF founder and director, Ken Boorom, to ask him some questions on this neglected parasite and some of the work they are doing at the foundation.
Herriman: The Blastocystis Research Foundation (BRF) recently turned four years old. What exactly happened to you to cause you to create this foundation?
Boorom: I got sick in April 2003, with chronic diarrhea and other symptoms, and could not get a reliable diagnosis for over a year. The treatments being prescribed by doctors aren’t working in about half the cases, and I’m one of the ones where they didn’t work. By 2006, I was so sick I had to go on medical disability. Neighbors and friends in our Oregon community started telling me about their family members who were sick, or that they had gotten sick with the same symptoms, and doctors also started telling me about their other patients. I also found out that every problem I was having had already been reported in the medical literature, either by an NIH scientist in the early 1990’s, or by researchers overseas. I started the foundation to get the problem with the diagnostics and treatments fixed.
Herriman: I saw on your web site the battle you are having with the CDC and NIH concerning the lack of research and general neglect to recognize overseas research that specifically identifies that pathogenicity of Blastocystis and its role in gastrointestinal disease. How do you explain their attitudes toward Blastocystis?
Boorom: We’re reminding the CDC and NIH of their responsibility, but we aren’t expecting much from those agencies. When it comes to GI pathogens, it’s rare for either the CDC or the NIH to be a leader in the field. Of the five major microbes identified as GI pathogens identified since 1980 (Giardia, Cyclospora, Cryptosporidium, Enterotoxic E Coli (ETEC), D. fragilis), the CDC played a role only in ETEC, in which Dr. Lee Riley of the CDC did a lot of the early work in the mid-1980’s. Giardia and Cryptosporidium were legislated as pathogens by an act of Congress.
There aren’t any laws that require federal agencies to take action on disease-causing microbes, as there are for disease-causing chemicals.In Blastocystis, you’ve got something that can be toxic enough to kill rats in animal studies, but there is no federal response, even though infection rates have climbed to 10-20% in some states. It’s important to spell out the law ahead of time, because there are always special interests that will want to do nothing, whether it is a chemical or an infectious disease, even when people are dying. Just read, And the Band Played On (Shilts, 2000)
Herriman: I have worked in parasitology labs here in the US and overseas for over 20 years and have always reported out the presence of Blastocystis with a quantity (rare, few, moderate, many). It shocked me to read in your latest newsletter that physicians may not even be informing their patients that they have Blastocystis in their stools. How long has this been going on?
Boorom: We first heard about this in 2006, and since then it has come up about a half dozen times, but it’s probably been going on for a long time. In the 1950’s, physicians wouldn’t tell patients if they had an incurable cancer (they would tell their families). There is no law requiring doctors to inform patients if their test results come back showing they have an infectious disease like Blastocystis. Some physicians are just too busy to follow-up, and others don’t think it’s important. At BRF, we think patients should be told so they can take precautions to avoid spreading the infection to others, and so they can be given the opportunity to treat the infection.
Herriman: I also found it interesting that there are so many foreign studies that make a connection with Blastocystis to irritable bowel syndrome (IBS). However, if I go to the NIH site or WebMD for example, there is no indication of this. Why is IBS treated as this elusive syndrome?
Boorom: Most of the people studying IBS in the United States work in groups that are trying to get grants to study “brain-gut” interactions, not infectious diseases. They are often interested in neurology or psychiatry. They have graduate students working on theses, and long-term funding, and the last thing they want to hear is that their patient population actually has an infectious disease.
This is one of the real tragedies of the NIH. The agency is focused on promoting the careers of scientists on the assumption that if scientists are having good careers that will be good for US patients. But there are many cases where something that is great for scientists is terrible for patients. For example, we have almost no parasitology researchers left in the United States, which may explain why research projects for parasitic diseases are going to neurologists.
Herriman: I must admit I was ignorant to many of the assertions your foundation has made. Can you briefly summarize what BRF is doing with the “Gulf War Syndrome” study?
Boorom: The Blastocystis “controversy” started just before the Persian Gulf War, when some physicians at an HMO in Oakland, CA began attacking researchers in at King Faisal Specialist Hospital in Saudi Arabia (and everywhere else) who were saying the Blastocystis was causing symptoms like abdominal pain, diarrhea, headaches, fatigue, depression, and nausea in their patients. The HMO doctors insisted that Blastocystis was harmless, and the patients had IBS, which was thought of as a kind of psychosomatic illness of neurotic women. After the Persian Gulf War, researchers in the Middle East started cranking out papers on Blastocystis – over a hundred so far if you include Turkey – showing the disease is epidemic in the region, and the treatments aren’t working. About a third of the medical students in Pakistan are sick.
So who was right? An easy experiment would be to send a bunch of US citizens to the Middle East and see if they get infected with Blastocystis, and to see if a third comes back sick. So we did the experiment with about a million troops, and about 250,000 came back sick, so I say the Saudis are right. But as soon as the troops got back, US researchers insisted it must be a special syndrome due to a toxic exposure, even though the Institute of Medicine kept insisting that the symptoms weren’t unique to veterans. The US researchers painted themselves into a corner by being so adamant that the disease was due to a toxicological exposure, they haven’t been able to take advantage of any research published in the region since then.
We published the first US study on civilians and veterans with Gulf War Illness symptoms that showed these people had Blastocystis infections that had not been identified. Our veteran had Gulf War Illness, and he spent the war in the United Arab Emirates, hundreds of miles away from any toxic chemicals.
Now we’re following up on that study with more vets. We’re really just copying the studies the Pakistanis are doing with their sick kids. We’re taking fecal samples from veterans with Gulf War Illness and testing them for Blastocystis.
Herriman: The Medical Letter has reported that flagyl, iodoquinol and septra as being effective treatment for Blastocystis infection. What are your thoughts on the effectiveness of the treatment regimens?
Boorom: The only recent study on the effectiveness of metronidazole (flagyl) in European adults put the cure rate at less than 50%. Despite all the talk about the disease, there are very few good treatment studies, and most of the ones we have are on people in the Middle East, or Mexican children. Just because something works in Mexico children doesn’t mean it’s going to work in adults in the US. Also, the diagnostics available for Blastocystis only identify about a third of infections, so it’s difficult to know if the drugs are making patients feel better for a few weeks, or really eradicating the infection.
Mr. Boorom, thank you for taking the time to answer these questions and good luck with your work.
Links of interest
Blastocystis Research Foundation
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[…] 2010, I did an email interview with Blastocystis Research Foundation (BRF) director, Ken Boorom on the parasite Blastocystis hominis and the work done by the BRF. Several years after that, I did […]