By Gail Kansky
Why is it so difficult for our own government to admit what has already been proven about CFIDS/ME? Why do they refuse to even admit that one of their own federal consultants*, when he was funded by our charity, proved in fully replicated research that this was, indeed, an autoimmune disease? Why do they hide what an NIH researcher** found years ago — that “CFS” was a slow progression to cancer? Why do they refuse to believe all those who have found the cause of this disease to be radiation such as the lead investigative researcher of Chernobyl?***
Recently, the head of our Centers for Disease Control and Prevention (CDC), in an interview about “CFS”, said, “There’s something going on here, and we ought to be able to come up with an answer with the tools we have.” Is our government really as ignorant about this illness as they claim to be or do they go on pretending? Perhaps someone may let him in on what is no secret and he can join us in finding a treatment based upon the actual cause. Instead, the same CDC that took the term of “myalgic encephalomyelitis” off our country’s diagnostic code well over a decade ago has now decided to take a more in-depth look at the EpsteinBarr Virus to see if that is causative of “CFS”. How much more proven science does one need that lets them know that the EBV has nothing to do with the cause?
Does anyone remember when this illness was called “Chronic Epstein-Barr Virus” (CEBV)? The NIH was in charge of it in the early 1980’s and, when more than one researcher had proven beyond any scientific doubt that EBV was not causative, the NIH was humiliated and, in desperation, asked the CDC to take over being in charge of the illness. The CDC began by having a committee change the name of the illness to “chronic fatigue syndrome”. When some of the medical professionals on that committee objected to the name and said the illness already had the name of myalgic encephalomyelitis, they were told to either go along with “CFS” or leave the committee and not get their names on a medical journal article that would be published. Some did leave. Others who stayed got to be rewarded as paid “consultants” to the CDC for “CFS”. Recently, one of those consultants from that earlier committee was asked to speak at the CDC’s “Chronic Fatigue Syndrome: Advancing Research and Clinical Education”: Anthony Komaroff, M.D. While he admitted it was a bad choice, he didn’t admit that others on the committee who wanted the illness called “myalgic encephalomyelitis” were told to either go along with what they finally admit is a “trivialzing” name or leave the committee. In fact, “clinical education” is, to this day, still absent from every medical school in this country and the CDC did not offer any ideas about how they would rectify that. Instead, they will infect mice with cells taken from patient to study the poor rodents they have infected with radioactive poison.
To pacify the patient community that complained about the name, which patients had complained about for more than two decades, the government began referring to it as “ME/CFS”. After many more years of the government continuing to treat the illness poorly, they changed the name to SEID, which stands for systemic exertion intolerance disease and was suggested by the Institute of Medicine. Once again, they focused on the fatigue but ignore the rest of the illness yet we’re supposed to be happy because they added “disease” instead of “syndrome”. The newest diagnostic criteria fits well with a few psychological illnesses as well. What our government continues to ignore is the scientifically proven immune dysfunction of CFIDS/ME. By ignoring the truth, they’re killing the patient community. The NIH has asked Dr. Brian Walitt to be the lead clinical investigator for its intramural study “Post-Infectious Myalgic Encephalomyopathy/Chronic Fatigue Syndrome.” Months ago, that same doctor told the audience at a fibromyalgia meeting that FMS was a purely psychological ailment.
So why is the government so determined to play games and pretend they care? The reason is due to the cause. They don’t want patients to be able to point their fingers at them for allowing a chronic illness to occur when they give the goahead along with lots of money for more nuclear entities. It’s nearly impossible for people to ignore that the government is aware of the dangers of radiation so their solution has been to merely ignore anyone who comes close to the truth. After all, isn’t this the same charity that turned down an invitation from the Office of Women’s Health to take our place on the Chronic Fatigue Syndrome Advisory Committee years ago? And when our reply was “thank you but no thank you”, they informed us that we were not just turning down a spot on that committee but also free airfare and free hotel accommodations yet our answer remained the same and the CFSAC has continued to accomplish nothing as their recommendations continue to be ignored. To this day, you’ll find it unheard of for our government to even acknowledge the very existence of the NCF despite us being a federally approved charity! In addition, although CFIDS/ME affects both genders, we remain under the Office of Women’s Health. Try to find one other neurological disease that affects both genders that is placed there. You won’t be successful. There was no error when they invited every group in the U.S. to serve on a Technical Development Workshop for the CDC but didn’t invite us. They know they can trust us to bring up all the scientifically proven facts to refute their lies and they, quite obiviously, want ignorance to continue to reign supreme.
We’ll go on toward funding research to, once again, prove the cause along with a therapy and look forward to the time to come when we can share that success with others and shut down. Although that’s not the correct business approach, we’re not a business. We’re just a bunch of sick volunteers that look forward to the day when we can feel a bit better.
* Yoshitsugi Hokama, Ph.D proved “CFS” autoimmunity in the early 2000’s in fully replicated science
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606