But it is the name that, thus far in the United States, we were GIVEN. No one asked for it and no one likes it.
The question is not who prefers CFS over M.E. Nobody does.
The question is how do we get those in authority, and in a position to control our lives - doctors, government agencies, employers - to quit using the name (or what it always ends up as, "chronic fatigue") and shift to something respectful and meaningful.
There is no use debating how to lead the horse to water. It is refusing to drink.
And as Lenny Jason has shown aptly over the years, the definition is equally important.
The ME/CFS campaign goes hand in hand with the Canadian Consensus Criteria. The CCC was created in 2003 after Canada adopted its own clinical manual for ICD-10, called ICD-10-CA, which puts CFS and M.E. together in the tabular version. They brought together about 20 clinicians from different nations, including the US, and hammered out a very good definition to go with the new name.
Those of us who have favored the name ME/CFS do not do so out of any love for or nostalgia for "CFS". Rather, we are trying to accomplish two goals:
1. Teach those in a position of power over our lives that most of us actually have M.E. - certainly, had the Incline Village and Lyndonville outbreaks occurred in England at the time, they would have gotten the diagnosis of M.E. But they were in the US, and Washington/Atlanta annointed them first with CEBV, then with CFS.
M.E. as a disease name was virtually unknown in the US because we had used Epidemic Neuromyesthenia when the UK and British Commonwealth adopted Myalgic Encephalomyelitis in the 1950's, when atypical polio no longer seemed appropriate. We need to teach those in power about Myalgic Encephalomyelitis so they can, in the NEXT step, dump CFS entirely.
In that context, the adoption by CFSAC of the name ME/CFS is progress towards abandoning CFS altogether.
2. We want physicians using the CCC for diagnosis, not the Fukuda definition. Since the name ME/CFS is used throughout the CCC, it also helps take them towards the next step, dropping CFS altogether.
Yes, there is now a new published definition for M.E. But in the US, it does not help with those in power over our lives if they refuse to use M.E. in the first place.
When I write about the disease, I try to use the phrase "patients with M.E. or a diagnosis of CFS," but that is clumsy to use in every sentence, so it ends up shorthanded to ME/CFS.
Better than "chronic fatigue."
Mary M. Schweitzer