Entries in CFS (1)


Federal Committee Moves to Change Name of Chronic Fatigue Syndrome to Reflect Seriousness

Photo Courtesy - Getty Images(WASHINGTON) -- On Thursday, a federal advisory committee unanimously agreed to change the name of chronic fatigue syndrome (CFS) to CFS-ME, according to MedPage Today.  The recommendation comes from the perceived need to make the disease sound more serious.

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

None of the 11 members of the Chronic Fatigue Syndrome Advisory Committee, a committee of experts intended to advise the Department of Health and Human Services (HHS),  questioned the decision to change the name of the disease.

Despite the unanimous agreement for the name change, MedPage Today said the "ME" is controversial to those in ME groups because ME is seen by some as a more serious condition.  This is due largely to the ME's identifiable trigger -- a viral illness -- where as medical professionals have yet to identify a cause for CFS.

However, 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, reports MedPage.

"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.

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