Last week, a federal advisory panel in the US recommended changing the name of chronic fatigue syndrome (CFS) to CFS-ME. The new suffix, depending on your preference, can stand for myalgic encephalopathy or myalgic encephalomyelitis. The move is still somewhat controversial, since the ME denotes inflammation in the brain and spinal cord, and there is yet to be any solid evidence linking CFS to pathology of the nervous system. Regardless, many patients and doctors find the current nomenclature trivializing.
“If it has a more scientific name, we might receive more funding than if it has a name that sounds just like you need to take a nap,” says panelist Susan Levine, according to MedPageToday.
There’s a historical precedent for disease (and gene) names stirring controversy, whether it’s syphilis in the Renaissance or last year’s dust-up over swine flu.
Image by obo-bobolina via Flickr Creative Commons
Actually there is an abundance of evidence in the research literature linking CFS to nervous system pathology. The problem is not enough people know about it because they don’t care to research the issue due to their pre-existing biases towards the condition, due in large part to the trivializing name.
Anthony Komaroff, MD summarizes the literature quite well in his presentations on the issue and had the following to say during the question-and-answer period of his recent lecture given to the Massachusetts CFIDS/ME & FM Association. When asked whether he would consider CFS to be a neurological illness, his answer was as follows:
“I would certainly say … that there is now abundant evidence of measurable abnormalities in the central nervous system and the autonomic nervous system in people with this illness. That makes it neurological.
That’s why I think it makes sense, as Dr. Gurwitz said, to call it Myalgic Ecephalomyelitis or Encephalopathy, because I think those two words adequately classify or describe an underlying biology that tests have shown to be the case."
Dr. Komaroff is Simcox/Clifford/Higby Professor of Medicine at Harvard Medical School, Senior Physician at Brigham and Women’s Hospital in Boston, and Editor-in-Chief of Harvard Health Publications. He was a co-author on both the Holmes (1988) and the Fukuda (1994) definitions of CFS.
There are several of Dr. Komaroff’s presentations available online, the following are a shorter version of this presentation followed by a longer one-
“Overview on HHV-6 and Chronic Fatigue Syndrome”
6th International Conference on HHV-6 & 7 in Baltimore, Maryland
https://www.scivee.tv/node/6831
“CFS & The Viral Connection”
CFIDS Assoc. Webinar series
https://www.youtube.com/watch?v=hyWSNitU-PQ