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Selected Letters on the Name Change: CFS Newsletter, September 6, 2006

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Subject: Why “syndrome” doesn’t work My two cents on calling any illness a “syndrome.” It never gets taken seriously. Syndrome is another way for the doctors to say it's all in your head or it's some weird phenomenon that no one understands. Throughout time, when you call something a syndrome, it immediately loses its punch. Syndromes are NOT taken seriously by the medical profession. – Tracy

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Subject: Joining the party Count me in. If I have to watch one more Army doctor roll his eyes when a soldier is diagnosed with CFS, I may explode. – Diane

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Subject: CFS name change. Educate not change I may be the only FM/CFS patient who thinks this way. I don't feel we should be spending our time trying to change the name of CFS. The validity of a disease or illness isn't judged on its name. Take for example ALS (Lou Gehrig's disease). It is not considered to be a serious disease because of the name. It is considered to be a serious disease because of the understanding and knowledge that we have learned about it. The same should be said with CFS. We don't need a fancy name that no one outside the medical community can pronounce. We need everyone to understand what CFS really is. We don't need more complications by running to a different name. If I were to change my name it wouldn't take away my FM/CFS. I would be stuck with the same misunderstood illnesses. CFS by any other name will still have the same problems. Educate not change. – Randy

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Subject: Go back to the name it should have had First – good for you for going for a name change. Second – No need to fix what isn't broke. There already is a name. M.E. And excellent diagnostic criteria – the Canadian ME/CFS consensus document. The name “CFS” has been an utter disaster. Twenty years after it was created – and [NIH CFS research scientist Dr. Stephen] Straus was using it two years before the [CDC’s] Holmes Committee publication – according to the CDC, 85 to 90 percent of patients have STILL not been diagnosed. If a "new" name and definition cannot get patients diagnosed, what purpose does it possibly serve? I live in a state (Delaware) where there are only a couple of doctors who "believe in" CFS. Furthermore, in England, three of the participants in the Fukuda committee reconvened and created their own definition of "CFS", which is more like the CDC's definition for "chronic fatigue." They have said so in public. They do not admit to any physical symptoms for a diagnosis of CFS. So internationally, the research is polluted by competing definitions being used for the same name. We have had the Holmes definition, the Fukuda definition, Wessely-Sharpe-White, Lloyd-Hickie (Australia), and now we have Reeves' new definition [Dr. William Reeves, principal CFS investigator at the CDC]. The focus on Fatigue has led to this new definition (which will be a disaster for patients) that is going to dumb-down the disease – Reeves already has said in the CFSAC that according to his new definition you can no longer distinguish CFS patients from other "fatigued" patients on the basis of "cognitive dysfunction" or "sleep disruption." (You do not have to take my word for it – though I was there – because he said the same things in the teleconference on the genome study). In fact, the patients chosen for the genome study were not chosen using the Fukuda definition, but on the basis of his questionnaires! So he is already coloring outside the lines. No wonder the scientists involved in the genome study said it was a terribly heterogeneous population. That being so, I don't know WHAT those 4 million "CFS" patients HAVE, but it is not what I have. At the Holmes Committee meeting that chose CFS in 1988, the members had to take a voice vote in front of Stephen Straus, whom they knew would have control over all research funding. There were two members who were experts in M.E. (Gordon Parrish and Byron Hyde), and one who was an expert in epidemic neuromyesthenia (Alexis Shelokov) – the American name for M.E. – but Shelokov said that since nobody was using epidemic neuromyesthenia any more, he also voted for M.E. The point is, in 1987, NIH and CDC both knew that experts in M.E. thought what was going on in Lyndonville, NV, to be a cluster outbreak of M.E. This was not a "new" disease. It should not have been given a "new" name. But CDC was not about to admit to a disease that had cluster outbreaks – or could be "epidemic". So … the result was this vacuous name, CFS – that has been terribly harmful overseas, where both adults and children have ended up in psychiatric hospitals because they won't "cooperate" with CBT and GET. As long as we stay with CFS, CBT and GET are in our near future. Which will be a disaster. (CBT is cognitive behavior therapy to teach you that you aren't as sick as you thought you were; GET is graded exercise therapy that is supposed to recondition you.) So – we should simply forget they ever called it CFS, and revert to the name that remains in contiguous use for half a century in the UK – Myalgic Encephalomyelitis, or M.E….The advantage is to be able to link in with 50 years of experience in the UK. And…I would have to say it would be the name I would choose, were I looking at this series of outbreaks from a hundred years' distance. – Mary

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Subject: NameChange Volunteer – suggestions from a Canadian with M.E. (CFS, CFIDS, etc.)
I wonder how many other illnesses have to be named by patients? It may be the only way to get a fair and representative name in the political and social climate we still face, but I would prefer it if unbiased M.E./CFS/CFIDS physicians chose the name, because it would force the mainstream medical community to start looking at the realities being brought forth by the (all too infrequent but excellent) research worldwide…. I mean researchers and physicians who know and understand the illness, like Jonathan Kerr, Dr. Gow in Scotland, Americans like David Bell, Canadians like Bruce Carruthers or Byron Hyde, or members of the expert panel which made the world acclaimed 2003 Canadian Consensus Document for diagnosis and treatment of CFS including Kenny De Meirleir? If these folks can band together to create a document like that, then we should be able to get them to reconvene for a new-name-fest. – Linda

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Subject: Hello CFS Friends Three out of four of our immediate family have/had CFS. We would most CERTAINLY be very interested in ANY efforts to change the name of this disabling disease/illness. Please let us know what we can do to help. Linda, Lloyd and Marie

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Subject: No name change Personally I don’t think it should be changed. It’s fine just the way it is. I like the name and the letters CFS; I’m used to that. If a new one is started, no one will know what you are referring to and you will spend the rest of your life explaining that it used to be xxxx, and now it’s xxxx. – Marg

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Subject: Name change volunteer
Yes, we need a name change – I'd like it to be the full version of ME. It's hard for me to…remember and then get the words out. But I guess its attractiveness is that it sounds so dreadful – an accurate depiction of the disease that has robbed me of my life. What if the CFIDS Association sent voting cards to its membership with the return address to a well known accounting firm? Or your organization might do this if the Association has no interest in a change. – Anne

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