By Robert Huntington

From Winter 2010-2011 Forum

In the last issue of The National Forum, I explained that the CFIDS Association of America (CAA) is not even addressing the same illness that the National CFIDS Foundation (NCF) represents despite both having "CFIDS" in the titles. The CAA represents CFS while the NCF represents ME. But I didn't go far enough. The CAA actually goes to great lengths to cover up the actual cause of ME.

For those that need further proof of the CAA coverup, they need only to go online to www.cfids.org/archives/2002rr/2002-rr1-article02.asp. They'll come to an article from the winter of 2002 that they describe as "CFS Case Studies: Test Your Diagnostic Skills". Along with much information that is erroneous, the CAA writes "Question #2: Is CFS infectious?". The answer is that, despite "outbreaks… have been reported, no infectious agent has ever been identified… toxic agents, radiation exposure and the like can also explain these 'epidemics,' but no such non-infectious causes have been associated yet with chronic fatigue syndrome." This was written before any science was announced that proved that ciguatera toxin was found in nearly 100% of those diagnosed with chronic fatigue syndrome but, as you can see from the newest book review ("Deadly Deceit") in this issue, radiation exposure was mentioned when this illness was already being called Chronic Epstein-Barr Virus. The book, written in the late 1980's and published in the early 1990's, with a hypothesis derived from many facts, stated low-level radiation was the cause of "AIDS, Chronic Epstein-Barr Virus, Lyme disease, Candida Albicans, herpes, septicemia and several other immune-deficiency ailments…"

Interesting, too, that the same webpage of the CAA mentioned above also asked, "Should a psychological evaluation be obtained?" The CAA's answer was "Perhaps". They recommend the HDAS (Hospital Depression Assessment Scale) that they state is "useful in patient screening for new onset of depression and anxiety in chronic illnesses such as CFS." No wonder they're in perfect lockstep with the CDC. No wonder they even hired their scientific director away from the CDC after she was one of the authors of the "Empirical Definition" turning CFS into a mental disorder in 2005. What tests do they recommend? Well, they suggest a physical examination, a complete blood count (CBC) that always comes out normal, a rheumatoid factor (RF) that is normal in CFIDS/ME, too, and HIV tests (no, we don't have HIV and many AIDS patients aren't positive, either) along with Lyme Disease (LD) tests. Well, there is no LD test that has been found to be valid to this day! Why? The cause isn't really known! Compare that list to the NCF's recommended tests shown to show abnormalities in CFIDS/ME: CD3, CD4, CD8, CD19 and CD4/CD8 ratios, Kappa/Lambda Light Chains, Soluble IL-2R and the assays for ciguatera toxin. There really is no comparison.

Why would the CAA, in 2002, even mention toxic agents and radiation exposure? Why not mention anything else? Why the two things that the NCF have been hot on the trail of as they follow proven and fully replicated science? The CAA were the ones who funded Dr. W. John Martin who claimed he found every patient with this illness had a "stealth virus". Did the CAA know what W. John really was testing for? They had to get quarterly reports when they were funding him. Did they know he was actually using the assays from the University of Hawaii's John A. Burns School of Medicine for ciguatera? Did they pull his funding because they decided not to go toward truth? Why? Did they know W. John sued to get the patent away from the discover, Dr. Yoshitsugi Hokama? (The court in California did not, of course, rule in W. John's favor.) For that matter, why did they also withdraw their funding from other researchers that were getting too close at the same time? Is that when they changed their emphasis and decided to become close cronies with the CDC and go after "CFS" instead of ME? Is that why the CAA, led by K. Kimberly Kenney McCleary led a campaign to "brand CFS"?

So much of their information has been distorted. Even their "Association History" is false. They claim they were "founded In Charlotte, North Carolina in 1987 by Marc Iverson". The truth is that Marc took over a local support group from the leader at a meeting in 1987. They kind of dance around the truth by admitting that CFIDS was their original name yet, if you read their history on their website, they brag about funding "research into a novel retrovirus* believed to be associated with CFIDS" yet they don't tell you that they pulled the funding of that retrovirus discoverer, Elaine DeFreitas, Ph.D, before she could finish her work! That was in the early 1990's when they finally became a non-profit group. I was active, at that time, in a national group from Portland, Oregon, that the CAA put out of business! I kept close tabs on the first advocacy group called CACTUS (CFIDS Action Campaign for the United States). It was CACTUS who hired the first lobbyist. It was CACTUS that held the first Lobby Day. It was the CAA who shut them down, too, and hired that lobbyist away from them. The CAA admit they happily took $2.8 million from the CDC to "broaden education activities" yet fail to tell you that the "education activities" they were part of tells you about "CFS" and how it is not CFIDS nor is it ME and should never be confused with either! They don't tell you that they never spent one million dollars for research after they had their million dollar research goal reached in 2008 nor do they tell you that the research they funded was more of the same already done. Well, some do admit that, sort of. For example, they funded Dr. Kathleen Light from the University of Utah. Dr. Light admitted, "the goal of our study was… to reconfirm our original findings" on post-exertional malaise. The CAA brag about their "Lobby Day" sometimes held in May but they fail to recognize the international "Awareness Day" of May 12th. They also brag about a joint "awareness campaign… by the Association and the CDC."

With their history, it didn't amaze me that they specifically rule out "toxic agents, radiation exposure". One's already been proven and the other will be with the help of you and me. It was Tilman Ruff, M.D. who said, in the Bulletin of the Atomic Scientists March of 1990,"The number and severity of outbreaks in close proximity to nuclear tests raise the question of whether radioactivity can cause ciguatera." The title of paper that quoted Dr. Ruff was "Bomb Tests Attack the Food Chain". Recently, Hillary Johnson, the author of Osler's Web, wrote on her website, "Who does CAA represent? The CDC —or the million sick Americans the CDC wrote off twenty years ago as hysterical?… I have CAA Fatigue Syndrome. I fear it's incurable."

Here's one last small example taken from the 2009 form 990 IRS reports of the two nonprofit groups:

• TOP 2 CAA SALARIES
• K. KIMBERLY MCLEARY (PRESIDENT): $170,195
• SUZANNE VERNON (SCIENTIFIC DIRECTOR) $136,255
• LARGEST RESEARCH GRANT: $66,667
  
  
• TOP 2 NCF SALARIES
• GAIL R. KANSKY (PRESIDENT): $0
• ALAN M. COCCHETTO (MEDICAL DIRECTOR): $0
• LARGEST RESEARCH GRANT: $120,000

The coverup continues. 'Nuff said.