Friday, October 22, 2010

Fly Away to XAND-Ado, or Where is Elaine DeFreitas? - Peggy Munson

Dr. David Bell predicts "I think treatments will be available from every family physician in America who accepts Medicare.  The question is whether this occurs next year or twenty years from now." 

I would argue that the best determinant of whether treatments are available in one year or twenty has a lot to do with whether we remain soft-spoken or ACT-UP, whether we deny history or make sure it never gets repeated, and whether we stop feeding the hands that bite us.   

Judy Mikovitz, who spearheaded the XMRV research at the Whittemore-Peterson Institute, said ME/CFS patients are too debilitated to even easily infect other people.  Addressing why XMRV hasn't spread like AIDS, Mikovitz said in Science News, "It's probably not spreading very fast, because people with chronic fatigue 'are too sick to do anything.'"       
Too sick to spread our own epidemic!  It's almost t-shirt worthy.

So where is Elaine DeFreitas?

This question is important because, as activists, we have to understand what happened to DeFreitas to keep history from being repeated and studies from not being repeated.

A 1996 Newsweek review of Osler's Web reads almost like a prediction about DeFreitas' legacy: ". . .when the CDC publishes a paper saying it has been unable to replicate her findings, her support evaporates. By early 1995, the saga has cost [Dr. Paul] Cheney and [Dr. David] Bell their marriages, and a regretful de Freitas fears her career as a scientist is finished. The book closes with the image of an infectious disease spreading unchecked as an arrogant medical establishment looks the other way."

It is important to note that DeFreitas thought she found in ME/CFS was an unknown human retrovirus.  The only known human retroviruses at the time were HIV and HTLV-1/HTLV-2.

As Hilary Johnson reported in Osler's Web:
"DeFreitas spoke next. . . . 'Clearly this virus is not HTLV-two. We now have additional data that verifies that point.'. . .Then DeFreitas moved on to the most interesting aspect of her work: the virus's appearance. 'We've look at four of these five cell lines. We can see particles by electron microscope, but not extracellular virus,' she said. 'We are not looking for a C-type retrovirus.' The significance of DeFreitas's comment most likely was appreciated by most present: every known human retrovirus was a C-type."

The ME/CFS forums are buzzing with people who claim to have "insider information" that Judy Mikovitz thinks DeFreitas actually discovered XMRV in ME/CFS back in the early '90s.
DeFreitas said, "I could see myself twenty years from now, when I'm a high school biology teacher and someone calls and says, 'Hey they just found a retrovirus in CFS.'  And maybe that's how it will happen.  And I know how I'll feel -- I'll feel great."


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