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From Winter 2010-2011 Forum

We're not the only ones frustrated with our government's nonaction in resolving this illness. The feeling are similar all around the world and our most recent disease model would explain why we're all being treated in much the same way. Just one example of this was a letter sent out to the Secretary of State in England concerning the PACE trials by Professor Malcolm Hooper. The National Forum has reported on Professor Hooper's efforts previously when he first lodged a complaint in early February with the Medical Research Council (MRC) in his country. The PACE trials are a form of cognitive behavioral therapy (CBT) combined with graded aerobic exercise therapy (GET) which, like our own CDC, are recommended for this disease and ignore all the previous science already proven on CFIDS/ME in order to treat this as a psychiatric disorder.

Professor Hooper, who is with the ME Association, initially sent a 442 page bound copy called "Magical Medicine: how to make a disease disappear" via special delivery but received no answer other than a signed receipt. Four months later, he got the assurance that that they would "respond in due course" and a telephone call nearly eight months later went unanswered. In October, he again wrote to tell them that his complaint is urgent. Like the vague CDC's newest Empirical diagnostic criteria, England's MRC is using their 1991 Oxford criteria that "lack diagnostic specificity" and the primary investigators of the PACE trial are those who believe ME is nonexistent and "CFS" is merely a form of chronic fatigue which is exactly what our own CDC hoped would occur when they renamed this illness "chronic fatigue syndrome" in 1988. We applaud Professor Hooper's efforts.

Interestingly enough, in 2008 we reported on a committee that named itself "Campaign for a Fair Name". They wanted to adopt the name of CFS/ME but the ME would stand not for "myalgic encephalomyelitis" but for "myalgic encephalopathy". Encephalomyelitis means inflammation of the brain and spine but encephalopathy means only a disorder of the brain. Thus, that name can be applied to any mental condition that exists today. While many patients quickly endorsed this, the National CFIDS Foundation adamently refused to do so. Some of the patient group representatives who heralded this new name were the CFIDS Association of America's founder Marc Iverson and CAA board member Lucinda Bateman, PANDORA's founder Marly Silverman, HHV6's co-founder Annette Whittemore (yes, the same one who now is touting another "cause") and Vermont CFIDS Association's Rik Carlson. The member committee touting this were most of the "specialists" from the United States. Pictured in front was a smiling Anthony Komaroff, M.D. Strangely enough, in Dr. Hooper's letter of compaint, he quoted Komaroff, who spoke in Massachusetts last April: "…there is now abundant evidence of measurable abnormalities in the central nervous system and the autonomic nervous system in people with this illness. That makes it neurological… That's why I think it makes sense to call it Myaglic Encephalomyelitis… because I think those two words adequately classify or describe an underlying biology that tests have shown to be the case". Why the flip-flop? The science he cited was known when he was backing CFS/ME-opathy. The most recent federal advisory committee for "CFS" (CFSAC) asked that the Department of Health and Human Services (DHHS) add "ME" to CFS but the ME could stand for either myalgic encephalomyelitis or -myopathy. The CDC, which is part of the DHHS, already uses that label when they urge patients to exercise, which has already been proven harmful for patients, and they refer to "The GET Guide 2008 by Chronic Fatigue Syndrome/ME Service" yet they removed ME (that stood for the original ME) from their diagnostic code before they came out with their CFS Empirical Definition which states that CFS cannot apply to a patient with any neurological signs or symptoms. With this in mind, why did a speaker who identified himself as being on the board of the IACFS as well as three other groups, Kenneth J. Friedman, PhD, ask the government for more "research that benefits the Chronic Fatigue Syndrome community"? The end result of this most recent CFSAC meeting was their usual decision to call another meeting.

Remarks about the request to add ME to CFS by the CFSAC was called "an unfortunate twist" by the British charity "Invest in ME". They explain that "myalgic encephalopathy does not exist" and "it is pointless to muddy the waters by introducing another temporary name which has no clear or credible backing." There are many others in Great Britain who try to educate correctly about ME. One other is the Countess of Mar who, in October, said, "ME has been categorised as a neurological condition at least since 1968. It is recognised as such by the World Health Organisation and the United Kingdom Government. However, for all these years, sufferers from this awful debilitating illness have been ignored, derided and mistreated."

A recent signer of our online petition for our goverment to recognize ME wrote, "ME describes an illness (or group of related illnesses) on a very scientific/clinical basis. 'CFS' does not and was developed for interesting issues in the history and sociology of science, that aren't based on any illness extant. Besides that the use of "CFS: is so undermining that patients like me often get treated like a hypochondriacal turkey. This is not the way to get decent medical care and is very undermining socially, when we know that social support and respect for the illness you have to say you have (you have ME but have to say you have 'CFS') undermines the quality of my and others lives and reduces the quality of our care and of the social support that has been shown to be important to healing." We agree. The definition of a disease is supposed to describe an entity but not create one, after all.

The NCF is not interested in popular campaigns or, for that matter, any popularity contest. We have previously refused to accept government funding to attend the CFSAC meetings or for any other federal offers. Science doesn't work by having a popular vote. Science is proven and replicated fact that cannot be argued with. It has nothing to do with the belief of people. We aren't interested in journal papers that use the vague wording of "points to", "appears to", "suggests that", or "linked to". We've already had decades of that. We fund science that goes forward and connects all the previously proven science and, when it comes to a name change, we don't believe one will be necessary when science is able to prove what the cause is since that will automatically put us into an entirely different classification as our medical committee's most recent disease model indicates. We refuse to be part of "patient campaigns" on the internet that are not based on replicated science. One recent one is a patient group for ME/CFS that is spending money to put ads in newspapers in the name of advocacy. While advocacy is great and we participate in it and always have, we refused to join a group that is determined use language that has never been scientifically proven and, we fully believe, will be, at most, proven to be yet another opportunistic virus just as so many already have. In the past, we funded work on HHV6-a until it was proven, with the help of our funding, to be another of these opportunistic virus and not causal. We funded work to replicate science on other viruses and retroviruses that proved to be more opportunistic and unwelcome guests of a weakened immune system. However, we refused to claim any of them as "causal" unless and until they were proven to be. None have been thus far. We're impatient because we're patients but we refuse to join any popularity contests to achieve our goal. That's never been the way science works. We remain grateful to all those who are helping us follow the scientific trail so that we can have a full answer and a therapy that will prove lasting while not doing any longterm damage.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606