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.