“US advisory committee recommends name change to CFS-ME”, says MedPageToday

From the ‘MedPage Today’ website, 14 October 2010 (Story by Emily P Walker, Washington correspondent)

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.

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 Susan Levine, MD, 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.

The panel has voted on a similar recommendation numerous times, but so far, no such networks exist.

While there was a good amount of discussion of the role of xenotropic murine leukemia virus-related virus — XMRV for short — in CFS, and the recent rash of studies relating to the XMRV, the panel didn’t mention the retrovirus in any recommendations.

XMRV was first linked to CFS in 2009, when a paper in Science reported finding evidence of XMRV in 67% of patients with the syndrome and 4% of healthy controls.

That study has prompted CFS patients to call for more research into the link, and some patients have reportedly been taking antiretroviral agents off-label to treat their CFS.

More recently, a rash of studies have failed to confirm that XMRV has any link to CFS.

A Dutch study from earlier this year failed to find any trace of the retrovirus in the blood of CFS patients, leading the researchers to conclude that the findings “cast doubt on the claim that XMRV is associated with chronic fatigue syndrome in the majority of patients.”

And just this week, three additional studies published in the Journal of Infectious Diseases found no link between the virus and the CFS.

However, in another recent small study, blood samples from more than 80% of patients with chronic fatigue syndrome were found to have viral gene sequences similar to those of murine leukemia virus (MLV).

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