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Article: The First Retrovirus in Chronic Fatigue Syndrome (ME/CFS)

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 15, 2010.

  1. Esther12

    Esther12 Senior Member

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    I'm only in the middle of reading it, but it's a really nicely written piece. Thanks Cort.

    Some of it sounds worryingly familiar with XMRV and the WPI.

    edit: Just done.

    I didn't really know much about this before, and this piece made the DeFreitas work sound more solid and widely respected (at the time) than I'd realised. I really hope XMRV leads on to somthing more solid. I feel like some past mistakes, specifically in terms of presentation, have been repeated. Wait and see...
  2. muffin

    muffin Senior Member

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    USA!
    I hope you are right ...

    I think the CDC is stuck between a rock and a hard place with regards to the XMRV Retrovirus replication. If they don't find anything, then they know WE will scream and point fingers at them that they did this failure delibertly. If they succeed, then they opened Marly's Pandora's Box and the whole rest of the history, specifically including the Defreitas Retrovirus, will come hurling out with a massive explosion.

    I am just grateful that there is an Internet that spreads information far and wide at seconds speed to the world so that little can be hidden AND that there are other non-government researchers replicating the WPI XMRV protocols exactly. This pushes aside the CDC and what they come up with (negative) when other outside labs are able to replicate and they aren't.

    Time will tell. Thanks Tina.
  3. JPV

    JPV Senior Member

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  4. JPV

    JPV Senior Member

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  5. JPV

    JPV Senior Member

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  6. JPV

    JPV Senior Member

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    From Dr. Cheney's site...

    A Retrovirus Called XMRV is Linked to CFS

  7. Cort

    Cort Phoenix Rising Founder

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    My take on this is that you could justify just about everybody's response to that first retrovirus. I came in expecting the CDC to be the bad guy. I expected them to show utter disregard to Dr. DeFrietas findings but I can get that at all. Yes, it wasn't a pretty situation. Yes, some parts of the agency did show disregard (and worse) for CFS but Dr. DeFrietas had her proponents and one of them was the guy heading up the retro virology study.

    It was was never a black-and-white situation/ us vs them situation. It was much more complicated than that. Dr. Folks sincerely tried. No, he never replicated her experiment exactly but his experience was that that wasn't necessary. A good number of labs tried and failed to replicate her experiment as well. On the other hand it was also clear that resources were always an issue for Dr. DeFreitas - if she'd had more time and more resources perhaps things would have turned out differently or its possible that they woudn't have.

    What I really really got from reading Osler's Web and a few other materials is that this is a very difficult part of science and its a very expensive part of science and you'd better have lots of money if you're going to engage in it.

    What Osler's Web didn't include is that Dr. DeFreitas got one more chance to replicate her findings using her special techniques and her patients and failed to distinguish between CFS patients and controls. This really highlights for me how difficult this arena of science is; she was clearly an excellent researcher, she had excellent credentials and she was working with an excellent institution. At the end of Osler's Web her other finding of note - HTLV-2 in multiple sclerosis - is under attack as well and it appears that that finding didn't work out either.

    I'm really astonished that the CFIDS Association was somehow made out to be one of the bad guys in all this. They were the only ones to fund Dr. DeFreitas, so far as I can tell, for five years. They funded several studies on her finding that turned out to have negative results. Dr. DeFreitas, herself, was unable to replicate her own findings in 1993. Even after she was unable to do that they funded her for at least another nine months. You have to ask yourself why a small organization with not a lot of money would keep pouring a lot of money in her work? Neither their scientific review board or another panel CFS professionals recommended that she be funded further. They also funded Dr. Martin's (failed) search for a retrovirus and they funded Dr. Grossberg's search for retrovirus for years. As late as 2001 they were funding him. His finding didn't work out either. Yet somehow they become one of the bad guys.

    We are lucky now almost 20 years later to be blessed with much better technology. It's clear that the WPI also has done much more work than Dr. DeFreitas was able to do. Most importantly they been able to show that what they've found is able to in fact other cells; whatever it is its 'alive' and kicking - its not just an abberant gene sequence or a whacked out endogenous retrovirus.
  8. Cort

    Cort Phoenix Rising Founder

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    I think we really are in a different situation this time. We have at least three groups from different federal agencies pursuing this; there's the DHHS working group of which Dr. Vernon and Dr. Mikovits are involved (big difference there!), the National Cancer Institute and the CDC (AIDS division) plus we know there were multiple lab's plus several CFS researchers that are digging into XMRV. I too was surprised by Dr. DeFreitas experience. I had thought that she was a young researcher just out of graduate school but she'd been publishing for something like six or seven years and she had around 20 papers under her belt. I think she was in her mid-30s - still young for a researcher but certainly not wet under the ears.

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