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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