Thursday, October 14, 2010

What's in a name?

When that name is CFS, a lot of political fireworks.
I'm told that at this afternoon's CFSAC meeting, the name was officially changed to ME/CFS and that Dept of Health and Human Services and NIH are already using that name.
In December 2008, a small group of activists held a virtual town hall meeting, and prepared a report for the Obama/Biden Transition Team ( ) which was selected for publication on the transition team's website.  We won an activism award for that report, and now it appears that the Obama Administration is actually acting on our recommendations.  To say that we are pleased with this development is an understatement.
<tossing virtual confetti>
Note: The article refers to 'three additional studies published in the
Journal of Infectious Diseases [finding] no link between the virus and
the CFS'; however only one of the studies dealt with CFS, the other
two were on HIV/hepatitis C and prostate cancer patients, with the
prostate cancer study reporting positive results.


CFS Panel Wants Name Change for Disorder
By Emily P. Walker, Washington Correspondent, MedPage Today
Published: October 14, 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.

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

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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