Saturday, October 16, 2010

CFSAC meeting available online

The CFSAC meeting from October 12-14, 2010, appears to be already available on the following website:
http://hhs.granicus.com/viewpublisher.php?view_id=5
 
Patients who attended are using words like "optimistic", "impressed" and "hope".
 
The vote was unanimous to change the name to ME/CFS.  OK, not all the way to ME as we patients had been lobbying for, but a first step in the right direction.
 
And nowadays, who's really sure what to call it, anyway.  We're stuck on a merry-go-round between CFS, ME, XMRV, XAND, HGRV, HGRAD, and mash-ups thereof.  Eventually, the politically-motivated and the scientifically-motivated will settle on a single name.  But it's taken us 22 years to reverse the 1988 decision to change ME to CFS, so expect that process to be a series of baby steps.
 
Years ago, Katrina Berne wrote:
David Bell, M.D., considers the word "fatigue" inappropriate since it is defined as a response to
exertion that is relieved by rest, whereas CFS "fatigue" may result from little or no exertion and is not substantially relieved by rest.
...The CDC agreed to study the matter [of a name change] but later announced
that the adoption of a new name is premature. In a catch-22, the present name
trivializes the illness, thereby discouraging the research funding needed to
uncover the pathophysiology of the disorder, which would help determine a more
accurate name.
 
We now know that CDC intended that catch-22 to have exactly that effect.  When Elaine DeFreitas found a virus in CFS patients, CDC claimed to be unable to replicate her research, and again when Judy Mikovits found a virus in CFS patients, CDC claimed to be unable to replicate her research.  They didn't WANT to find anything, because Straus/Reeves had staked their reputations on It's All In Your Head. 
 
Now CDC is being exposed, as NIH and FDA were able to replicate Dr. Judy's work.  NIH has already adopted the ME/CFS terminology.  Eventually, CDC will either have to go along or become irrelevant.
 
First they ignore you, then they laugh at you, then they fight you, then you win.  -- Gandhi
In 1984, they ignored the evidence in Tahoe that there was an epidemic afoot.  In 1988, they gave the disease the laughable name CFS, and posted jokes at headquarters about these lazy, crazy patients.  Since then they've been fighting us at every turn.  And in the last year, thanks to the Whittemores' dedication, we have begun to win.
 
 
 
 

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