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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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I'm Rather Confused - Help!

Discussion in 'XMRV Research and Replication Studies' started by Persimmon, Oct 3, 2011.

  1. Persimmon

    Persimmon Senior Member

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    Wow, this whole episode is very weird. The saga has gone on more than 2 years now, and I have no idea what to make of it. I used to have more confidence in the medical research community.

    What does the Silverman retraction mean? Was everything in the 2009 Science paper undermined by his contamination disclosure, or not?

    Does Silverman's retraction infer that his XMRV-prostate cancer conclusions are undermined as well?
    Does it undermine the various studies that claim to have demonstrated that XMRV can live and replicate in various types of human cells?
    Is the study of monkeys (marques) infected with XMRV still presumed to be valid?
    Are attempts to detect XMRV/HGRVs in tissues undermined?

    Why is it that almost all of the research has been focused on finding retroviruses in the blood of ME/CFS sufferers? I understand that the first paper linking XMRV to ME/CFS reported XMRV in the blood, while the first papers linking XMRV to prostate cancer reported finding XMRV in tissues, and that maybe subsequent research in each field has simply followed these leading papers... but there are various reasons to suspect it could be more reliably/easily found (if it is there at all) in tissues than in blood. The marque study would point this way (if it's still considered valid); many researchers have seemed to recognise that XMRV would be difficult to find in the blood; and tissue testing (as I understand it) is less susceptible to MLV contamination. Might it have been that no-one was sure which tissues to look at; or perhaps, that there were ethic constraints on taking internal tissue samples where the suspected virus hadn't been confirmed? (I know Prof De Mierlier has taken lots of stomach biopsies, but one unpublished research effort seems to be the extent of human tissue investigations.)

    It beats me why there couldn't have been a much quicker, and more co-ordinated, direct response to the 2009 Science paper. For example, surely a small, simplified Lipkin-style study could have been done straight away, just to verify whether the WPI-CC-NIH could repeat their findings under a regime of externally controlled blinded samples. This wouldn't have been expensive (trivial compared to the collective amounts spent since) and if successful, could have been scaled up to larger samples and other labs... It would have revealed within months whether the 2009 Science results could be objectively replicated. While I have confidence in Prof Lipkin, it's now a year since he took on this role, and they are yet to even collect samples.

    Instead of a rapid, focused response, we've all been kept completely in the dark, and fed a diet of Mikovitz-Coffin Vauderville-style performances and the like. Clearly, even the most informed and level-headed researchers (eg ones who have repeatedly made public comments on the subject) have been averse to providing us with with transparent accounts of their understanding of the situation - no, I didn't expect them to come out and call fellow-researchers baffoons or liers, but there are other ways to communicate clearly. Anyway, I've felt like I've been in the dark throughout this needlessly drawn-out saga, and have found this very frustrating.

    If anyone can provide clear and informed answers to any of my questions, it would be appreciated.
    merylg likes this.
  2. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi Persimmon, confusion abounds at the moment. We don't have all the facts. Not everyone who has responsibility has responded to these issues. Not everyone who knows things is in a legal position to tell us. This is history unfolding, and we will be confused until some time after the facts are available. Stay tuned .... Bye, Alex
    leela, merylg and ixchelkali like this.
  3. ixchelkali

    ixchelkali Senior Member

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    Long Beach, CA
    I think that if you're confused and are unsure of what to make of it all, you have a good grasp of the current situation. You've asked good questions. I hope we'll eventually have answers to them and that it won't all just be dropped.

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