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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Dr Mikovits excellent reply to Science Journal Request for Retraction of XMRV paper

Discussion in 'XMRV Research and Replication Studies' started by Countrygirl, May 31, 2011.

  1. Wayne

    Wayne Senior Member

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    Hi RedRuth,

    I think if you took the time to peruse the history of how "scientists" at the CDC and other institutions have treated pwME/CFS over the past 25-30 years, you wouldn't be so shocked at the dismay many on this board feel. If you're interested in understanding this better, I would suggest perusing Hilary Johnson's book "Osler's Web", and visit her website at Oslersweb.com. I think you will be even more shocked by what you find there than what you've found here.

    Best, Wayne
     
  2. liquid sky

    liquid sky Senior Member

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    The results of the BWG and the Lipkin study are not completed yet. Those were to be the deciding factors. It makes no sense to withdraw the paper at this time. If they could prove there was contamination, believe me, they would in a heartbeat.

    New discoveries are often fought against because they go against ingrained beliefs, like ME is a somatoform disorder. True science needs to continue.
     
  3. RedRuth

    RedRuth Senior Member

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    That's what I thought, I'm not a retrovirologist but I have worked on Vpu (an HIV accessory protein) and the sequence of this protein varies enormously.
     
  4. Jemal

    Jemal Senior Member

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    I don't think there was much to lose as CFS has been sorely neglected anyway. There's almost no money for research (the government spends 6 million in the US I think?). Are they going to take away more money? Pff...
     
  5. Chris

    Chris Senior Member

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    I think there are at least two very separate issues here; the first is whether Judy is right in thinking that XMRV is the- or at least a-cause of CFS. Judy explicitly did not claim that in the Science paper--simply that she had found it in a high % of CFS patients, and in a much lower % of controls. I think there is lots of room for real doubt on the question of causality, but none on the existence of XMRV.

    But another issue is what exactly is the implication of asking an author to "withdraw" a paper? This was the proposal voiced by Stoye; why just this paper? Would Alter and Lo be asked to withdraw theirs too? And Silverman and Klein their papers? Will XMRV be totally expunged from the research record? I find this very disturbing indeed--is XMRV only to be allowed to be associated with prostate cancer, but never with CFS? This is suggestive of suppression and denial.

    That Science is about to publish a paper negative towards XMRV is fine--let s(S)cience proceed dialectically. But the only reason for which Judy should "withdraw" her paper would be that she now believes she was mistaken. Clearly she does not believe that, and so the paper should remain as and where it is. A record of work done. Whether that work contains a real answer to our problems is quite another question still to be answered.
    Chris
     
  6. Jemal

    Jemal Senior Member

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    The retraction is really a weird move. Apparently it wasn't meant to appear in media either... specifically the WSJ.
    This is what Prof. Racaniello had to say about the retraction:

     
  7. Bob

    Bob

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    Hi pine,
    How has Mikovits' work been shown to be incorrect? This isn't the case at all.
    The zero/zero studies have not found XMRV in ME patients, but that doesn't mean that Mikovits' work is invalid or incorrect.
    The knowledge behind XMRV has strengthened ever since Mikovits published her paper, and much of the developing of knowledge has strengthened Mikovits' work, not weakened it.
    I suggest that Mikovits defends her work so strongly because every new bit of research she does strengthens it.
    Unfortunately, we haven't seen most of Mikovits' research because she cannot get it published due to the wonderfully objective and non-political nature of the scientific establishment.
    I believe that Mikovits has contemplated that she might be wrong, and has carried out further tests to check her work over and over again.
    I'm sure that if she detected contamination, then she would admit that her work was invalid.
     
  8. RedRuth

    RedRuth Senior Member

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    I think it's important to make the distinction between medics and scientists! But then I would. I don't doubt that CFS sufferers have been badly treated, I know it took along time to be recognised as an illness, I remember when it was 'yuppie flu'. But that's no excuse to accuse scientists of dishonesty and conspiracy. I honestly thought it sounded like a fascinating and plausible story when I first read about it and I'm sure most retrovirologists did too.
     
  9. Jemal

    Jemal Senior Member

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    0/0 studies mean XMRV doesn't exist or is contamination.
    Turning it around, 0/0 studies could also mean you can't detect XMRV.

    At the moment I still think the second option is possible, as several laboratories can find XMRV. Even the CDC's HIV department can now find it and ruled out contamination.
     
  10. Jemal

    Jemal Senior Member

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    As someone said on this forum: The WPI will either be spectacular heroes or spectacular goats.

    Mikovits doesn't back down, because she still believes in her result. There must be tremendous pressure on her. If she goes down, she is going down fighting and I admire that. I am very glad she's acting like a bulldog... the last retrovirus that was associated with ME/CFS didn't meet a kind fate.
     
  11. Bob

    Bob

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    H LJS,
    Would you say that the WPI's newly published sequences are VP62?
     
  12. currer

    currer Senior Member

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    Well said, jemal
    we must support the WPI.
    Who will help us if they go under? No-one.
     
  13. Enid

    Enid Senior Member

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    So what are you Redruth in the whole sad story of Myalgic Encephalomyalitis ? Scientist or Medic - have you the answer.
     
  14. Bob

    Bob

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    Please believe me RedRuth, research into CFS could diminish any further than the current situation.
    The XMRV research has actually given our community a public relations boost that nothing else could have done.
    ME/CFS has a far higher profile than it did two years ago.
    Some of the XMRV has been controversial, but that's to be expected when a new human retrovirus has been discovered.
     
  15. Bob

    Bob

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    That's strange, I have completely the opposite impression, overall.
     
  16. pine108kell

    pine108kell Senior Member

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    I guess quotes such as this: "Unfortunately, we haven't seen most of Mikovits' research because she cannot get it published due to the wonderfully objective and non-political nature of the scientific establishment." tend to tilt me in that direction.
     
  17. RedRuth

    RedRuth Senior Member

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    Like I said, academic interest. My sister asked me to look into the subject when she thought she might be a CFS sufferer. I didn't really have any intention of posting here but as I said, I'm really shocked at the 1. Unquestioning support of Mikovits by some people here. 2. The abuse of scientists.

    I'm not a retrovirolgist (I'm a molecular cell biologist) but I can follow most of the science.
     
  18. currer

    currer Senior Member

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    What abuse of scientists?

    Two of my friends have died from CFS/ME. Both young men in their thirtuies. One was a suicide because he could not stand the pain and suffering and contempt from the medical establishment any longer. He was bedbound and housebound for years. he could not hold a conversation he was so weak. He got no help.

    And you think we abuse scientists? get real!
     
  19. Bob

    Bob

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    Sometimes people make generalisations, but this is based on years of neglect from the establishment, both at a personal level and on a general & nation-wide level.
    We really do have reason to accuse some scientists of abuse, dishonesty and conspiracy.
    I am particularly thinking about the way we have been treated by the psychiatric lobby over the years.
    The latest example of corruption and dishonesty is evident in the PACE Trial. But you wouldn't be aware of this unless you studied the results closely, and compared the results with the conclusions and press releases.
     
  20. Enid

    Enid Senior Member

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    Well then Redruth you might bring your area of knowledge to aid the millions who suffer ME/CFS.
     

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