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CDC XMRV Retrovirology Study on CFS Published

Discussion in 'XMRV Research and Replication Studies' started by KFG, Jul 1, 2010.

  1. Bob

    Bob

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    Hi Angela,

    I agree with much of what you say...

    I think I am always coming from a place of ME patients being the underdog anyway... None of what you describe is new to us... I kind of take it for granted that we are ignored and made fun of... We've always been ignored and made fun of... But, I think, far less so now than in the past... things have been changing, from my perspective.

    So can we ignore the rattlings of an obscure forum without prejudicing our cause? I think so, but maybe you don't... it's OK if we disagree on that.

    If it wasn't for WPI and Judy Mikovits then we wouldn't know anything about XMRV... The forums that you talk about didn't stop the WPI, and they haven't stopped the current XMRV research, although I know there are forces that would like to.

    Now, obviously we don't want the new research to be buried, but I honestly believe we are in a far more powerful position now than we ever have before. XMRV is a fact... it wouldn't be easy to bury it because so many researchers are already studying it... the XMRV research seems to have a momentum of its own. The WPI XMRV research is so strong that I just don't see how it can be buried. Certain forces are possibly attempting to bury it at the moment but we don't know that for sure, and I don't think that they will be successful on this occasion. But obviously that's not a reason to sit back feel sanguine. I think that the most the CDC can do in this case is to stall for time... and remember that Reeves isn't part of it any more, so that's another thing going in our favour.

    Obviously i'm very concerned that the NIH/FDA paper gets published soon though, as this would really be a game changer.

    Bob
  2. judderwocky

    judderwocky Senior Member

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    What exactly do you think is emotional about the petition? what exactly is it you think is disorganized? what letters are you referring to?
  3. julius

    julius Watchoo lookin' at?

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    When the XMRV news first broke, Reeves said he 'didn't expect the results to be validated'. It was with that mindset that this study was designed.
  4. Bob

    Bob

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    Just a thought about the withheld NIH/FDA study...
    I can't really see how they can be asked to test the CDC's samples...
    This would fundamentally change the study... it wouldn't be a case of just being more stringent... it would alter the paper completely...
    I would think that this wouldn't be expected.

    Firstly, the CDC samples would have been handled in a completely different way to the NIH/FDA study, so they couldn't compare like with like.

    So in order for the study to have any consistency, the samples would need to be drawn afresh...
    And I can't see this happening in a short space of time... So I really don't think this is what is happening...
    I just think that there are extra checks being carried out, just as the WPI had to.
  5. glenp

    glenp "and this too shall pass"

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    Bob the papers had already been accepted
  6. MaryAnn

    MaryAnn

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    Yes Julius; confirmation bias at its best. The CDC found exactly what they set out to find, no XMRV in anybody.
  7. Bob

    Bob

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    Yes, thanks glen, that's exactly my point...
    Rumours are going around that the NIH/FDA scientists are being forced to test the CDC's negative samples, as part of the checks on their study...
    And so the point that I'm making is that I can't see how these rumours can have any substance, based on the fact that the study has already been completed.
    Peer reviewers don't demand that a study is fundamentally changed... They just check for quality, and they might demand certain quality control checks.
  8. Recovery Soon

    Recovery Soon Senior Member

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    Ditto.....
  9. Levi

    Levi Senior Member

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    Well,
    Judderwocky,

    My post mentioned nothing about a petition. One of us has failed to actually read this thread vis-a-vis demanding letters to researchers like Dr. Alter or bureaucrats like Catherine Sebellius. If it was me, I apologize.

    My point, which I thought was obvious, was that if we were truly organized, we would be connecting with prostate cancer organizations, especially with regard to the latest generation of XMRV antibody tests described in my link.

  10. pollycbr125

    pollycbr125 Senior Member

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    yorkshire
  11. Levi

    Levi Senior Member

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    Yes,

    I am sensing a competitive rush to patent for the first FDA approved "Gold Standard" XMRV test. That may be why the prostate cancer team at Emory and the WPI are not co-ordinating. It would also explain the high interest about XMRV shown by the WSJ.

    While the best researchers are playing it close to the vest in order to protect patents, the CDC/CBT psych groups are having a field day publishing Zero/Zero XMRV studies. How sad.

  12. dsdmom

    dsdmom Senior Member

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    What I don't understand is how a place like the CDC, which was unable to find XMRV at all, would be involved with developing a test. I feel like I read elsewhere on this thread that they were part of a team with this purpose. Seems sort of like common sense that if you can't find xmrv when others can, why would anybody think that their test was accurate?
  13. judderwocky

    judderwocky Senior Member

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    well.... i guess we could just invade their boards.... where do we start?
  14. IamME

    IamME Too sick for an identity

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    I couldn't actually find that quote in the PDF, which would have been useful. At least not verbatim. If you're being satirical you should make it clear.

    The reality is sadly away ahead of the satire, and has been ever since the CDC decided they were going to study something that has no physical signs or abnormalities, and if something ever is found in it, or describes it in serious terms, that must mean it was something ELSE and not WHAT THEY WANT TO TALK ABOUT, even if they agree it's heterogenous. And no-one seems powerful enough to stop these idiots.
  15. Levi

    Levi Senior Member

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    Good question. My first thought would be to petition our own leadership and ME/CFS organizations to make a statement on this issue. Maybe jspotila could lend her thoughtful analyis here. I would guess that the most effective course will be to look within first, then reach out together to the prostate cancer community.

    I would submit that only guys with both CFS/ME and prostate cancer should invade their boards; at least at first. And those same guys should be first in line to be considered by researchers for future XMRV confirmation studies in order to prevent a Zero/Zero result.

  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Text: WPI PDF Statement regarding Centers for Disease Control XMRV Study

    Undated PDF


    http://www.wpinstitute.org/news/docs/XMRV-CDC Statementrevisedawfinalawfinal.pdf

    Whittemore Peterson Institute Statement regarding

    Centers for Disease Control XMRV Study

    Contrary to the WPI study published in Science in October, 2009, as well as studies done by others, including the NIH and FDA, Mr. William Switzer of the Centers for Disease Control reported that his research team was unable to detect XMRV in CFS patient samples. This negative finding is in contrast to the WPI study in which we detected XMRV in 67% of CFS patient samples.

    To correctly replicate scientific studies it is imperative that researchers use the same methods and patient criteria to ensure accurate results. The methodology used by the CDC was not the same as that used in the WPI study nor was the patient selection criteria. In September 2009, WPI sent the CDC twenty confirmed positive samples and the appropriate methodology to help them develop a clinically validated test. However, this team chose not to do this.

    Until researchers use clinically validated tests to detect XMRV in patient samples, as WPI and their collaborators have successfully done, an accurate association of XMRV to any diseased population cannot be made. For this reason, WPI researchers and many others are currently validating more sensitive clinical assays to assist federal agencies in their search for the true prevalence of XMRV in the human population.

    WPI will continue its core mission to deliver answers to patients with neuro-immune diseases by supporting the development of accurate diagnostics and providing effective therapeutics and clinical care.

    [PDF Ends]
  17. alex3619

    alex3619 Senior Member

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    Hi Bob

    For a really optimistic view (one which I am too pessimistic to believe in at the moment), consider that the DHHS might be wanting the FDA/NIH results exceptionally well grounded prior to an in depth probe into the failings of the CDC. Maybe the CDC has made just one too many mistakes and the DHHS is feeling pressured to act before the scandal contaminates them too?

    Bye
    Alex

  18. Bob

    Bob

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    Hi Alex,

    Wouldn't that be nice!
    But I'm afraid that even I'm not quite optimistic enough to believe that! (But how I'd like to believe it!)

    However, Reeves has left the CDC now, so I wonder if his influence isn't now quite as strong as we fear it might be?

    My personal opinion is that I think that the NIH/FDA study will be published in a couple of months, after some extra checks have been made on it... There's a lot of pressure for it to be published, so I just can't see how it can be be swept under the carpet this time.

    I understand why people are fearing the worst... but I really think that the situation has changed for us now.
    There, I'm being optimistic again! Sorry, I can't help it, and I know that a healthy dose of cynicism is needed at times like these!

    Bob
  19. natasa778

    natasa778 Senior Member

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    what people tend to forget (actually I haven't heard anyone notice/mention that) is that the person who replaced him DID publish with him a lot in the past - I forgot the lady's name but she has been working with, or under, reeves for decades it seems. apple+tree etc
  20. Daffodil

    Daffodil Senior Member

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    jason from racaniello's blog says he will not submit future papers to retrovirology or PNAS because of the blocking of publications re: XMRV. wish more researchers would do this. the credibility of these journals will be laughable.

    woonder how the autism community feels about this.

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