CDC: "CFS" IS NOT ME
By Robert Huntington
One nonprofit that is heavily funded by the government recently held a one million dollar campaign to raise research funds for "CFS", the CFIDS Association of America (CAA). What is CFS? According to both the CAA and our own government, CFS is a an overactive immune system that doesn't handle stress correctly. To quote Dr. Esther Sternberg, an NIH (National Institute of Health) researcher, "Stress can make you sick...if too little stress response hormones are produced, immune cells won't turn off leading to an overactive immune system that can result in chronic fatigue syndrome and other inflammatory conditions (such as asthma and skin conditions) and autoimmune diseases such as rheumatoid arthritis and lupus." In other words, a "flight or fight" response. It is not what this newsletter addresses nor what our funding is going toward and it's not what science has proven. The National CFIDS Foundation, Inc. addresses CFIDS (chronic fatigue immune dysfunction syndrome) that have repeatedly said is Myalgic Encephalomyelitis (ME). While there isn't a disease that stress can't worsen, we do NOT have a problem handling stress any more than anyone who is healthy. In fact, since all of us gotten this disease, stress has been heaped upon us from every direction. Merely getting a correct diagnosis was, for most of us, a years-long and very stressful ordeal. Living with any disease is quite stressful. But stress does NOT cause CFIDS/ME or, for that matter, Lupus or any of the other diseases that Dr. Sternberg was quoted saying in an October story in the Christian Post.
Our Centers for Disease Control and Prevention (CDC) was bent on hiding ME when changing the name from "Chronic Epstein-Barr Virus" after the NIH's name of CEBV turned out to be completely erroneous when science proved no EBV virus was causative. The CDC changed the name to "Chronic Fatigue Syndrome" over the objections of those on the committee who objected. The CDC developed a criteria (Holmes) as loosely as possible. Physicians, however, still were diagnosing patients with CFS whom they knew had ME. The CDC developed another criteria that was yet looser (Fukuda). Physicians still diagnosed patients so the Empirical Definition was developed that used a series of psychological tests. One of the authors of this new criteria of a "fatiguing illness", who knew very well that she was not describing anyone with CFIDS/ME became the first "scientific" director of the CAA, Dr. Susanne Vernon. The CAA no longer uses the term, CFIDS, even though their quarterly newsletter is entitled The CFIDS Chronicle. They only talk of "CFS". Need more proof? "Chapter One, Course WB1032"(1) from our CDC gives an "Overview of CFS" and says "There is no case definition for CFIDS...the name myalgic encephalomyelitis (ME) was coined in the 1950's to clarify well-documented outbreaks of disease; however ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS." The page was last modified in 2007. They fail to note, however, that they removed the diagnostic code for ME years before!
The CAA, trying to get money for their million dollar campaign where not one dollar will be spent on CFIDS/ME, sent out a letter urging others to "HELP ACCELERATE CFS RESERACH!" No, that's not a typo. Although they pay their employees hundreds of thousands of dollars, they misspelled research! Just under that was printed "If not us, who? If not now, when?" The revered Jewish religeous sage and scholar, Hillel, never said "If not us, who?" He did say "If not now, when?" But it followed with "If I am not for myself, who will be for me? And when I am for myself, what am I?" Hillel is also famous for a reciprocity expression that we know of as the "Golden Rule", which translates into "That which is hateful to you, do not do to your fellow." This must have offended many. It certainly was offensive to me. It is especially hateful for an association called The CFIDS Association of America to act like a puppet on a string to do the CDC's bidding and to falsify everything they are doing in a repeated ploy known to those in the know as a typical "Dog and Pony Show." It is evil to have others who are struggling with CFIDS/ME think they are spending so much money for research when none of it will apply to CFIDS/ME since they are ignoring all carefully replicated research that has been funded by the National CFIDS Foundation, Inc. as well as all careful and replicated research to date on both CFS and ME. It is evil to ignore all those who have died of this disease on our Memorial List, especially when some of their own original board members are now on the list. I'll bet not one of them is looking down on the CAA lovingly.
It doesn't end there. The CAA pays to have their association come up first no matter how you use the internet. Naively, I googled the National CFIDS Foundation, knowing full well it was the not-for-profit national charity that I belong to. The first listing that came up was the CFIDS Association of America. You pay dearly for that! That doesn't happen accidently. There's even a course physicians can take for continuing medical education credits that every physician, pharmacist, and nurse needs to continue practicing. It's called "Chronic Fatigue Syndrome: From Diagnosis to Management" (2). The authors are Marcia Harmon who is an paid employee of the CAA with no medical background, K. Kimberly McCleary, the CAA's CEO who earns a larger annual salary amount than the CAA ever gave to one research study but, again, has no medical background, Lucinda Bateman, M.D., who admits she also is paid to be a principal investigator for a phase 3 drug trial for Ampligen, a drug that is trying to get FDA approval for "CFS" despite so many patients who have tried it and ended up on our Memorial List and is a member of the CAA's board, and Charles Lapp, M.D., who, using the the common vernacular, "sold out" years ago and now he insists that you can improve with CFS if you try hard enough. You won't read about any of the tests that show real abnormalities of CFIDS/ME in this course, especially the only test that has been known to be always positive and has been found to be a biomarker for autoimmune diseases, the assay for ciguatera. Instead, they ask the doctors, nurses and pharmacists multiple choice questions. An example is suggesting you tell "John", who has been diagnosed with "CFS" about activity/exercise regimens for CFS patients and you have a choice of (1) "Should begin with 15-30 minutes of walking or cycling", (2) "Should include vigorous aerobic exercise for cardiovascular health", (3) "Should incorporate pacing, strength and conditioning, graded exercies, and a well-balanced diet", and (4) Should be done in one long session rather than several short sessions." Even my 11 year old niece knows the correct answer to that although she doesn't really know what is wrong with her uncle except he has "seefids". It has been shown again and again by specialists that the majority of patients with CFIDS/ME only worsen with exercise.
I tried "googling" again. The National CFIDS Foundation is listed and rated quite high on Guidestar, an internet site that rates charities according to what they do and how much they spend on research. I found a newer charity site, charitynavigator.org, has refused to list The National CFIDS Foundation (NCF). Their reason is that they only rate large charities that take in a minimum of $500,000 from the general public! Using one IRS form, they found the NCF raised just under $200,000 in that category. Large charities helped develop this newer site when Guidestar gave them low rating because of the small amount they used to fund research. It's yet another example of how large businesses, called charities, camouflage what they do. They are really rating nonprofit businesses and the NCF just doesn't fit into that category.
And how is that CDC sponsored educational extravaganza that's already cost millions going? The Sporting Blog on the internet ran a story by Spencer Hall on how disgusted he was when some talk radio hosts suggested that Magic Johnson never really had AIDS and went on to name others such as Tom Brady who "coped with being infectiously sexy remarkably well" and Steve Nash, an NBA star "who suffered from split ends since 2004". Spencer included Manny Ramirez who deals with his "chronic fatigue syndrome...by taking off half of every inning." We can't blame Spencer for not knowing that this isn't a funny condition. CFS is a joke and has been since the CDC chose to rename CEBV, obscure the real disease of ME and chose the silly and trivializing name of CFS. Remember those who were on the committee and told the other committee members that the name is going to pyschologize an illness? When they were ignored, they quit. But, remember, this contining education program is NOT about ME and they say so themselves.
Our government, who took away the diagnostic code of ME years ago, has given a new code for diagnosing to HHV-6 encephalitis to find yet another way to "divide and conqure" since they knew very well that HHV-6 is no more than a dangerous secondary infection that is found in ME as well as in AIDS, MS (multiple sclerosis) and many other illnesses. Along with the CAA, who have patted themselves on the back for reaching their million dollar goal, they are an embarrassment to the CFIDS/ME community. In a boasting release, the CAA said they would now be able to "restructure" their grant process by making the grants "more robust". Remember when I told you their ceiling of just $60,000 was laughable a few years ago? That it didn't even come close to what K. Kimberly McCleary was earning annually? "More robust" doesn't begin to find markers or "objective diagnosis and effective treatment for CFS" since they have yet to address what is in their title: "CFIDS". What markers do they expect to find for stress? The CAA even uses the new "one million patients" affected buying into the CDC's new definition of "CFS" that upped the prevalance so dramatically. It's one enormous game of smoke and mirrors that are deceiving so many patients and medical professionals. Birds gotta fly, fish gotta swim, and it seems more than apparent, the CDC and their cohorts, gotta obfuscate.
One patient from the Netherlands put it this way: "While the bureaucracy with highly-paid officials goes on and on - for the patients nothing has changed since the ME outbreaks in the eighties in the USA. The CDC works, together with the 'Wessely School', towards a common goal: Eliminating ME from the Map!" The CDC has, indeed, changed their focus to "fatiguing illnesses" that include every physical and mental illness known to man. Instead of narrowing the field scientifically, they have enlarged it to ensure that nothing will be found that has anything to do with CFIDS/ME.
But, hey, if you don't think I'm right, take some lessons on how to destress you life. After all, it's stress that's making you sick according to our own government. If you've got anything neurological going on or "muscular signs", you've got ME as defined by Dr. Milton Ramsey in the 1950's and what is listed by the World Health Organization (WHO) under neurological diseases. CFIDS/ME is not CFS. To cover themselves, the CDC put out a press release a few years ago. They said, "A number of illnesses have been described that have a similar spectrum of symptoms to CFS. These include...myalgic encephalomyelitis..." Both our government and the CAA are intentially misinforming the public and the patients.
[Ed. Note: The National Forum quoted the NIH that said ME was not "CFS" in an issue previously.]
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606