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Today PLOS ONE requests release of PACE data

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Mar 7, 2016.

  1. Countrygirl

    Countrygirl ME is not MUS

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    https://forbetterscience.wordpress....tient-privacy-concerns-and-parasite-paranoia/

     
  2. A.B.

    A.B. Senior Member

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    It seems that pretty much everyone agrees that the data should be shared.

    Hopefully the judges will also see it this way.

    Will we see a first PACE author leave the sinking ship? There has got to be some point where someone, with less personal investment into this than the others, makes a calculation and decides it's better to quit before it's too late.
     
  3. wdb

    wdb Senior Member

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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Should this thread be merged with this one?
     
  5. Countrygirl

    Countrygirl ME is not MUS

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    James Coyne has just tweeted this: 'Because I will live up to PACE investigators' calling me 'vexatious', moving on to other high value, soft targets like SMILE trial'.
     
  6. wdb

    wdb Senior Member

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    So the question now is what powers do PLOS have to enforce this ? Presumably the PACE authors will not comply without fighting it with everything they have got, it wouldn't even surprise me if they'd rather have the paper retracted than release the data.
     
  7. Sean

    Sean Senior Member

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    Which would be a de facto admission that they have something to hide, and their reputations would take a battering.

    They have painted themselves into a corner on this issue, and deserve everything that is coming.
     
  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    At least retracting the paper would have a more immediate effect.
    Something about the NICE guidelines for ME not being reevaluated while PACE is seen as solid evidence and MEA trying to get the moratorium lifted.
    Sorry someone else will have to clarify having trouble finding words today.
     
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  9. Stewart

    Stewart Senior Member

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    I suspect they'll try and drag things out until the after the Information Tribunal case has been heard next month. If they win the case they'll trumpet the importance of patient confidentiality, and try to use this as cover to justify their withdrawal of the PLOS paper. If they lose the data will be made public anyway, so there'd be no point in them continuing to refuse the PLOS request.
     
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