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Science asks authors to retract XMRV/CFS paper

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Nielk, May 30, 2011.

  1. currer

    currer Senior Member

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    KDM gave a presentation at the Invest in ME conference last month.

    A report of what he said is available on the IiME site www.investinme.org
    Go to conference 2011 page and to conference report.
  2. alex3619

    alex3619 Senior Member

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    Hi Jemal and eric_s, I have said for some time that one explanation that would have XMRV as benign, and still making us sick, is basically what you describe here. Our immune system is trying to kill the virus. Its a retrovirus - we can't kill it. So our immune system does not stop until it can no longer see the virus or its effects - temporary remission.

    The argument that we can kill the virus so it can't hurt us is a blood argument. It is, ironically, one reason the virus is hard to find in blood. Is it true for other tissues? In particular, is it true for mucous membranes, the most likely route of infection? I doubt it.

    Bye
    Alex

    ps This argument can be extended to other viruses that are not cleared - both herpes and enteroviruses which can persist in the tissues.
  3. Bob

    Bob

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    I thought that it might just be a mistake in the wording of the article, because that would make it 100% positive.
    Do you think it's correct currer?

    It says:
    "He had looked at 61 patients in Europe for XMRV, MLV and XMRVc and all were positive to at least one."

    But it also says:
    "84 CFS patients 57% +ve XMRV"

    Article:
    http://www.investinme.org/IiME Conf...onal ME Conference 2011 Conference Report.htm
  4. currer

    currer Senior Member

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    On re-reading it it looks to me as if there are references to two studies here. But it is ambiguous. It says all the 61 were positive either for MLvs XMRV or XMRVc. People can go to the link and see for themselves!

    It will be nice to get the DVD and see how he presented his data.
    I dont remember him making much drama out of his results though. I remember his presentation as pretty low-key.
    Does anyone else who was there have another interpretation?
  5. Jemal

    Jemal Senior Member

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    Here is a long article on the Coffin paper, on the university website he works for.
    http://now.tufts.edu/articles/exonerating-virus

    It seems one of his students did a lot of the work. This is the conclusion:

  6. WillowJ

    WillowJ Senior Member

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    It did bring ME/CFS back into the spotlight, but whether it will bring more funding--so desperately needed--remains to be seen. It hasn't yet, and government says no, no funding. Maybe Coffin will put his influence where his mouth is. I hope so.
  7. Jemal

    Jemal Senior Member

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    I think it is very easy for all the scientists to say that ME/CFS needs more research. I am also thinking most of them will forget about us. They weren't used to studying ME/CFS before and only jumped on it when it was associated with a retrovirus. Now that they think that association is dead, most will move back to their usual research.
  8. eric_s

    eric_s Senior Member

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    Coffin got pretty emotional at the SoK Worhshop himself, just to say.

    It's also interesting to read what Randy Schekman, the editor-in-chief of PNAS says about the situation (maybe this has already been posted, i don't know):
    http://blogs.wsj.com/health/2011/06...on-cfs-xmrv-link-what-about-related-research/
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Hadn't thought of that. Makes some sense to me, but wouldn't it have to travel by blood or lymph to get all around the body? It seems like it would have to to cause a multi-system disease like ME.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Am I understanding this right that they are saying they are using antibodies to SFFV they got from a monkey or somewhere to detect the SU protein of MuLVs. So these are not antibodies from the ME patients, right?

    They also say that you can't make antibodies to a contaminant. So does this mean that they are doing two antibody experiments: the one where they use SFFV antibodies and another where they look for the patients' own antibodies?
  11. alex3619

    alex3619 Senior Member

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    Hi justinreilly, in classical virology that would be "correct". However, a major means of transmission of MLVs is direct cell to cell transfer. It is slow. Over time a few will get through via blood, and set up new colonies in new organs, and then start the cell to cell transmission.

    The second issue is: cytokines and other immune factors. The cells that produce them can travel in the blood everywhere, and these hormones will cause damage - how much and of what kind I do not think we really understand.

    All of this is still speculation of course - we still wait for uncontested evidence of XMRV association or causation of ME/CFS. We need the likes of the Lipkin study.

    Bye
    Alex
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    But the only reason to connect XMRV to M.E/CFS is because Lombardi et al say it is detectable in the blood of CFS patients. Without that 'blood' evidence there is no reason to consider XMRV as being relevant to M.E/CFS any more than any other randomly selected micro-organism. Certainly one can hypothesise how XMRV might 'cause' M.E/CFS and come up with convincing disease models - but why choose XMRV ? This question is important because if Lipkin and the BWG do not provide support for XMRV in blood, then there will need to be some collective 'reflection' upon the XMRV saga if M.E/CFS communities are not be at the constant mercy of every research enthusiasm that follows, following every high and low with the commitment of a sports fan.

    IVI
  13. ukxmrv

    ukxmrv Senior Member

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    ME patients follow the science behind the disease with the committment of someone fighting for their lives, IVI
    I can't see anything wrong with that
    and I mean follow, as in critically examine, and not blindly follow.
  14. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Of course I agree with critically examine and not blindly follow but is that something achievable by people who see themselves as fighting for their lives ? At the very least such an attitude suggest a likely preference for ready answers rather than the posing of fundamental questions. To suggest that XMRV wasnt latched onto with undue expectations is denying what has to be obvious to anyone who has read the M.E/CFS forums in the last two years. That wanting XMRV to pan out is understandable, but the group attitude has been unhealthy and unrealistic and has not involved a general critical appraisal of all the available science. My suggestion is that now is the time to learn from the XMRV saga, and for those involved in the forums to start a more considered approach to science because the odds are against XMRV being a single answer, and M.E/CFS affected people are going to need positive engagement with a broad range of medical science for many years to come.

    Of course another ten, twenty, thirty years without effective treatment would be really crap and at that range some of us will never enjoy the benefits of research, but given that there may well be a genetic element to M.E/CFS, we should IMO not focus just on our individual 'fights to survive' but on what the long term propects are for our, children, grand children, nephews, nieces etc. Saving the world from an XMRV plague had a great ring to it, but even if what we are stuck with is plain boring old M.E that's been around for forever, we can at least 'achieve' a quiet personal herosim by being part of the reasoned deconstruction of the elements of a confusing illness.

    IVI
  15. ukxmrv

    ukxmrv Senior Member

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    That's just your poor opinion of other patients, though IVI. In fact most of your post was just your judgement of other patients. Nothing more.

    Patients who have an interest in XMRV also are looking at the future. They see possible future generations who could possibly have a retrovirus. They see possible children infected. These are no short term goals.

    It is a "quiet personal heroism" that they would consider the horror of having a retrovirus and yet be unselfish enough to consider their family members and the ongoing potential misery and harm that could occur.

    I've been posing "fundamental questions" for nearly 30 years. Not going to stop now.

    Not interested in easy answers. Never have been. Lots of patients considering XMRV are like that.
  16. Bob

    Bob

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    Not really... There is also Alter and Lo... And now there is Hanson, De Meirlier, and Beiger.

    The virus might have an afinity to certain tissue types, and might replicate easily in these tissues, even if it is quickly cleared from the blood.

    Wanting XMRV to be fully investigated is not the same as 'choosing' XMRV.

    IVI, I think you misunderstand the science, otherwise you would not have these patronising and insulting opinions about the ME community.
    You call it an 'XMRV saga', but I would call it an ongoing investigation into a scientific discovery.
    I think that most ME patients are happy to watch XMRV research run its course.
    Things only get heated when we perceive that certain establishment figures are trying to shut down the research for no valid scientific reason.

    And even if XMRV proves not to be associated with ME, the WPI have still discovered an antibody biomarker.
    That's an enormously interesting and significant discovery in itself.
  17. eric_s

    eric_s Senior Member

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    Also there have now been stomach biopsies where they have found XMRV.
  18. Bob

    Bob

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    Have you got a link for that please eric?
  19. eric_s

    eric_s Senior Member

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    No, but i could try to look for one. I know that Dr. De Meirleir is analyzing (i guess at RedLabs) stomach biopsies from at least some of his patients. I have personally met one of these patients.
  20. Enid

    Enid Senior Member

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    Thanks for your input eric - the current work being done by K de M and Beiger (and treating) is very exciting.

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