The Chronic Fatigue Syndrome Coordinating Council (CFSCC) met in late April in Washington to discuss significant issues affecting our patient population. The Wisconsin CFS Association posted a letter to activist Roger Burns and asked him to represent our viewpoint about the name change at the CFSCC meeting. (See page 9 for our position paper on the subject.) For the purpose of this update, I asked for clarification from Mr. Burns about the results of the meeting. What follows is a summary of his comments.

With the assistance of Congressman John Porter, Mr. Burns was able to arrange to make a special presentation before the committee on April 29. The chair of the CFSCC preceded this presentation by stating that the name of the illness is an international matter which should not be decided by a national group such as the CFSCC.

Mr. Burns presented the results of a name change survey in which 250 responded, and then he outlined the issues, questions and conflicts over name change. He suggested that the use of an eponym would remove the stigma caused by the name chronic fatigue syndrome and not interfere with the scientific aspects of choosing a new name.

Mr. Burns requested that a panel be formed to deal with name change and stigma issues. Also, he asked that Surgeon General Dr. David Satcher make a public statement to help legitimize CFS. At the end of the day during a summary of events, no action was taken on forming a panel. Committee member Kim Kenny of the CFIDS Association announced she would draft a statement that the CFSCC might issue in October which would help legitimize CFS. A copy of the statement would be sent to the US Surgeon General.

My view is that a name change is a top priority because the advocacy work we do is counter productive when we have such a goofy label for our illness. It begs not to be taken seriously. In the dictionary, "fatigue" means "tired" or "weary." Are you kidding? That’s like saying that "dead" means one is "permanently disabled" — a true statement, but hardly an accurate account of the status of that person’ health. In the old Bill Cosby tapes, Bill recollects his mama say, "I’m sick and tired ... sick and tired." Did mama Cosby have CFS too?

What’s in a name? Think about once popular names that new parents now avoid. A high school boy named Richard is definitely Rich or Ricky .. The point is that language is alive and it changes. We incorporate new words into our vocabulary all the time and drop words when they are no longer appropriate. Did you know that Multiple Sclerosis was once labeled Hysterical Paralysis Syndrome and Downs Syndrome was called Mongolian Idiot Syndrome?

Although I’m mystified that Myalgic Encephalomyelitis/Encephalomyopathy (M.E.) was "discovered" and renamed chronic fatigue syndrome in the United States, perhaps it made sense to researchers ten years ago. Does it make sense now? Can the CFS and CFIDS labels possibly help further the work of scientists? It seems to me that the complexities of M.E. are so great that a label of CFS totally minimizes ongoing scientific research. "Chronic fatigue syndrome" is no longer appropriate.

It just doesn’t seem that hard to me to accept the World Health Organization’s label of M.E. or an eponym at the very least--end of discussion. Done. Patients will no longer have to unsuccessfully define and defend "fatigue," and the discussion will be left up to researchers who will eventually figure it out. Advocates will no longer have to haul the "fatigue baggage" up the hill as they try to offer information and support to patients and their families.