If you have been diagnosed with chronic fatigue syndrome, you know what a truly horrible name that is for the illness it is supposed to represent. The name makes it sound like you're just tired all the time. In fact, CFS is so much more. It can be extremely debilitating with immune system dysfunction and often severe cognitive functioning problems.
Earlier this month the Chronic Fatigue Syndrome Advisory Committee (CFSAC) – an 11-member panel of outside experts meant to advise the Department of Health and Human Services (HHS) – unanimously endorsed a recommendation to change the name of chronic fatigue syndrome to ME/CFS, citing the need to make the disease sound more serious.
Why am I so excited about this recommendation?
To explain what a big step this is and why I am so excited about it, I'll need to give you some background information.
Since the CDC first chose to label this illness as chronic fatigue syndrome in 1988, patients have mounted efforts to get the name changed to something that would be taken more seriously. (To read more about the history of the name-change efforts, read A Disease In Search of a Name.)
Finally, in early 2007 ProHealth founder, Rich Carson, convened a meeting of several of the top doctors and researchers in the CFS field and they unanimously agreed to recommend the name be changed to the acronym ME/CFS. The ME stood for myalgic encephalomyelitis, which is the name by which this illness is known in much of the world; the CFS, of course stood for chronic fatigue syndrome. (To read more about why this name was chosen, read Why ME/CFS?)
I was asked to serve on the committee charged with implementing this name change. We launched a Web site, started an online petition, wrote articles and talked to anyone we could find with any kind of interest in or association with ME/CFS.
We also tried to mediate the passionate debate that broke out over whether the ME should stand for myalgic encephalomyelitis or myalgic encephalopathy. The medical advisory board later decided it could legitimately stand for either. Interestingly, when the CFSAC made their recommendation, they stated that the ME could stand for either myalgic encephalomyelitis or myalgic encephalopathy.
Past efforts to get the name changed had always been started by patients. While patients certainly have the greatest interest in and the most to gain from a better name, we have very little power to actually accomplish it without support from the medical community and/or the government.
But we felt that this time we had a good chance of succeeding in our name-change efforts because this time it started with the top medical professionals in the field. If they started using ME/CFS in their research papers and their practices, there was a good chance that the rest of the medical community and possibly even the government would soon follow their lead. Apparently we were on to something.
About the same time we launched the Fair Name Campaign, the IACFS (International Association of Chronic Fatigue Syndrome), an international organization of medical professionals who work with CFS, voted to change their name to the IACFS/ME. And soon we began to see research papers published using ME/CFS. We also noticed that more and more patient and professional groups and Web sites were also using ME/CFS as well.
We made a lot of progress in a relatively short period of time. But I have to admit, I really thought it would take many more years before the government would even consider making the change. That is why I was so surprised and happy to see the CFSAC's recommendation.
I know this is just a recommendation. The Department of Health and Human Services hasn't said they will accept the recommendation. And more importantly, the CDC – the entity that gave us the awful name to begin with – hasn't made any move to accept the new name. (I'm not holding my breath on that one.) But this is the most progress we've ever made toward a more acceptable name. No, it's not a perfect name, but it's a big step in the right direction.
For another excellent article about changing the name was written by Dorothy Wall, author of Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome read:
The Right Name, the Right Strategy, the Right Time
Published On: October 31, 2010