IACFS PRIMER TURNED DOWN BY NCF
By Mike Reynolds
From Summer 2012 Forum
In mid-May, the IACFS/ME (International Committee for CFS/ME) came out with their first primer for clinical practitioners. Since the NCF has continued to offer a primer put out in 1992, I knew the charity was looking forward to being able to offer a new one with updated information that included all the new, scientifically proven, fully replicated and undisputed knowledge that has been gained since 1992. A board member told me they were ready to offer copies to all members...until they read it. The "ME/CFS: A Primer for Clinical Practioners" written by "members of the IACFS/ME primer writing committee", not only left out some of the most important advancements but, far worse for patients, completely excluded facts that could save a patient's life: the anesthesia protocol (Hokama et al, J Clin Lab Anal, 2003). I remembered our President's Message from the winter edition and shook my head sadly.
Our president was alerted to the primer by the IACFS President, Fred Friedberg, Ph.D. who e-mailed her, "The primer has just been published on the IACFS/ME website". I knew that our board had voted, if the primer contained important information, to not only contribute to the IACFS but to have it available to distribute to our membership. However, the new primer not only left out so much important scientific advancement but even contained multiple errors! But, because the anesthesia protocol was one fact that could actually save a patient's life, the NCF's presidfent, Gail, wrote back to Dr. Friedberg to let him know that the NCF would not be a party for distribution. She shared this when he promptly e-mailed back the reply, "We have evidence that sodium pathways are involved in this illness but the exact mechanisms have not been defined. Moreover, the whole ciguatera thing has been considered but disregarded by most of my colleagues. We might have a group review the data she suggests and consider it for inclusion in the next version of the Primer.."
They were wrong. Dead wrong. Dr. Hokama not only discovered that the sodium channel was being accessed but the NCF funded him to find the exact area of the pathway being used and that, too, was published (Hokama et al, J Clin Lab Anal, 2006). I didn't even know body pathways had different areas! But just his quote of "the whole ciguatera thing" demonstrated their total ignorance of scientific fact. It was called, from the very beginning when the science was first announced at an international toxicology conference in 2002, the "ciguatera epitope". The word, "epitope", means "difference"! Even I know that. The blood sent for research from different physicians in this country was taken apart molecule by molecule and found not to be ciguatera but to have a tiny difference. Evidently, that fact is not understood by those who wrote the primer. The primer authors included psychologists, one psychiatrist, one exercise psysiologist, one pathogist, one physical therapist, four general practitioners and one psysiologist. More telling, the primer was funded, substantially, by Hemispherx BioPharma, the pharmaceutical that has been trying to get Ampligen approved for CFIDS/ME for decades and admits a "conflict of interest" of two of the authors, Charles Lapp, M.D. and Lucinda Bateman, M.D., who are both on the payroll of that pharmaceutical. Lapp, it turns out, wrote "Recommendations for Persons with ME/CFS" who are "anticipating surgery" in the new primer where he suggests that "garlic" and other things are of "most concern" while he states that the illness has "mild immunological abnormalities". Dr. Lapp, it seems, has no knowledge that a part of our immune system, Stat-1, is being decimated along with much more fully proven science. His recommendations will not "serve to reduce the risk of surgical procedures" but may actually harm other patients or even kill patients who disregard the anesthesia protocol in favor of reducing their garlic and other suggestions that will do no good.
I understand that many bloggers on the internet have totally misconstrued research because they don't have a science background. That's why I welcome the explanations put in this newsletter from the medical committee and the medical director. I expected a bit more from the IACFS but I got the same ignorance from them as I found in an article published in England's British Journal of Anaesthesia (101/4, 2008. Fisher, Rose) when they published on "idiopathic environmental intolerance", referring to multiple chemical sensitivity, as well as "chronic fatigue syndrome". While the British authors admit to "abnormal cardiovascular responses", they conclude that "It is not known whether any particular anaesthetic drugs are more likely than others to proclaim problems."
[Ed. Note: Mike was given a copy of the IACFS e-mails upon request for this article. There were, of course, other reasons why the NCF turned down distributing this primer. One of the first was not giving physicians the simple testing that would show abnormalities found in CFIDS/ME which we've given to our members and all those who inquire for years.]
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