ME/CFS: A Name For Today by Cort Johnson

ME/CFS: A Name For Today by Cort Johnson

A Meaningful Name ME can refer to myalgic encephalomyelitis or myalgic encephalopathy and thus can cover a range of central nervous system abnormalities. The reason such a term is appropriate for CFS is that’s what’s found in the disease – a range of neurological abnormalities. Before researchers and others sign onto a name they need clarity that it is describing is what is present. If central nervous system inflammation was consistently found in study after study shown to be present in CFS then myalgic encephalomyelitis would be the appropriate term. That, however, has not been the case. The broad term ME accurately reflects the broad state of science regarding CFS.

Because the Behaviorists Embrace ‘ME’ It Should be Discarded – an underlying assumption has been that since some behaviorally oriented researchers use encephalopathy or ‘CFS/ME’ it should be discarded. There are at least two problems with this; a look at the Name Change Campaign Board indicates that at least as many and probably more well-known and respected physicians and researchers (Dr. Komaroff, Cheney, Klimas, De Meirleir, Bell, etc.) with a physiological orientation to CFS embrace ‘ME’ as do the behavorists.

The other is that ‘encephalomyelitis’, i.e. a disease caused by inflammation in the central nervous system, doesn’t have much of a leg, scientifically speaking, to stand on. The brain imaging studies that have had the most success in CFS, thus far, are those examining how the brain functions not how it looks. Perhaps this is due to different subsets, perhaps the right studies have not been done, perhaps we need better technology, perhaps that will change, etc. ….perhaps but that’s all conjecture..

The problem is that while the patient community adores m. encephalomyelitis much of the research community apparently does not. In this Name Change Campaign patients need to balance the need for validation that they believe m. encephalomyelitis provides with the need to build broad support for this disease – a support that m. encephalomyelitis has historically never achieved.

A Poor History – Myalgic encephalomyelitis advocates imply that until CFS came along and muddied the waters that all was well and good. But in the thirty-five years preceding chronic fatigue syndrome’s emergence on the scene around 1985 only about 45 papers were published on myalgic encephalomyelitis (just over one a year). The great majority of these ‘papers’ were one or two or three page descriptions of the disease or letters stating one viewpoint or the other about it. Basically until chronic fatigue syndrome came along myalgic encephalomyelitis was a fringe topic – ignored by almost all. In the 20 years since CFS came along literally thousands of papers have been published on it.

The truth is that the ability of a group of international researchers to come together, create a definition – no matter how bad – and agree on a name, no matter how bad! – nevertheless gave the disease the kind of legitimacy it never had before. ME or CFS or whatever you want to call it went from a fringe topic frequented only by a few researchers to a well known disease with a Journal, a professional society, national support organizations and research programs at the federal level in the US and more.

Yes there are many, many problems to deal with but returning CFS to a name that no longer accurately describes it, at least as far as the broad swath of the research community is concerned, will not help.

An Acceptable Compromise – This Name Change Campaign is not about picking anyone’s favorite name’; it is not about showing up Wessely and his cohorts; it is about creating the right name for the right time. It is a lucid and clearheaded attempt to create a name that will move the field forward as fast as is possible, a name that will engage both the scientific community and the patient community.

Patients can stick to myalgic encephalomyelitis if they wish. They can vote for any name they wish to in the campaign. But if they do stick with m. encephalomyelitis they should note that much of the research support for a name change will drop away. Researchers need to be able to publish their papers. No papers on myalgic encephalomyelitis have been published for many years. Researchers cannot decide to call a disease something and expect to be published.

Despite great patient frustration with the name for 20 years chronic fatigue syndrome has been chronic fatigue syndrome and it will be for the forseeable future if this campaign does not succeed. But adding ME to CFS starts to put a crack in the CFS dike. It begins to draw attention to ‘ME’. The only way to introduce myalgic encephalomyelitis back into the game is to do it slowly.

If ME patients want myalgic encephalomyelitis back they should vote for ME/CFS because ME/CFS re-introduces, for the first time in over 20 years, myalgic encephalomyelitis back into the game. Don’t let the perfect be the enemy of the good – vote for ME/CFS. ME/CFS will move the field forward, m. encephalomyelitis will not.

Cort Johnson 2/18/08/p>

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