Panel Pushes for Chronic Fatigue Syndrome Name Change

Oct. 15, 2010— -- WASHINGTON -- A federal advisory committee unanimously endorsed a recommendation Thursday to change the name of chronic fatigue syndrome (CFS) to CFS-ME, citing a need to make the disease sound more serious.

The ME can stand for either myalgic encephalomyelitis or myalgic encephalopathy, the panel said.

For its part, no member of the Chronic Fatigue Syndrome Advisory Committee -- a committee of outside experts meant to advise the Department of Health and Human Services (HHS) -- questioned the validity of CFS.

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The 11-member panel, which meets several times a year, wrapped up its three-day meeting by endorsing two recommendations for HHS, one of which was to add the "ME".

Using both the "CFS" and the "ME" is somewhat controversial to those in ME groups because ME is seen by some as the more serious condition.

That is partly because it has a clearly identifiable trigger -- viral illness -- whereas the causes of CFS continue to stymie the medical community, and physicians diagnose CFS based entirely on symptoms.

But patients pleaded with the panel on Thursday to either change the name altogether or else tack on the "ME."

"Fatigue is just one symptom of the disease," one CFS patient told the panel via telephone. "You don't call Parkinson's 'shaking disease' or Alzheimer's 'forgetting disease.'"

Panelist Dr. Susan Levine, a physician and researcher who treats CFS patients, agreed that the name "chronic fatigue syndrome" doesn't accurately reflect the seriousness of the disease.

"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," she said.

The panel also endorsed a recommendation for HHS to create a national CFS-ME network of treatment centers in order to expand access to care, to develop educational initiatives, and to allow researchers to share data.