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Coyne: In the standoff over release of the PACE PLOS One trial data, has the journal just blinked?

Discussion in 'General ME/CFS News' started by Dolphin, Apr 7, 2016.

  1. Dolphin

    Dolphin Senior Member

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  2. Yogi

    Yogi Senior Member

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    It is clear given the length of time since Coyne's request in November that PACE investigators are stonewalling this and it is a concern that Weasely said that they are organising an "independent review". They will be attempting to come out in a few months and say the " independent review" by their friends and associates found a few minor honest mistakes but everything is overall okay with the trial. WE MUST NOT ACCEPT THEIR INDEPENDENT REVIEW. We need the 42 signatories to the Lancet to be given the data.

    QMUL claim that Peter White is getting annoyed and frustrated with all the data requests but this clearly shows that this is BS as they are spending so much effort with persuading PLOS avoiding the release of data.

    These PACE PIs will not release their data without further pressure added on them for the data . We need to redouble our effort!!!

    Their actions are the definition of vexatious as the pressure is mounting and the truth is coming out sooner or later.
     
    Justin30, Mrs Sowester, ahmo and 3 others like this.
  3. Sasha

    Sasha Fine, thank you

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    Where have you heard about this "independent review", @Yogi?
     
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  4. BurnA

    BurnA Senior Member

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    That doesn't read good.

    Some good comments and replies by Coyne. He isn't giving up which is good.
     
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  5. Bob

    Bob

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    If there is an independent review, i think it's only in relation to whether and how they should make the data available.
     
    Sasha likes this.
  6. BurnA

    BurnA Senior Member

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    He was spouting some nonsense at one stage about releasing the data for independant review if I remember correctly. Of course he means, releasing it to friends and family for independent review.
     
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  7. Bob

    Bob

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    Ah, yes, that's the Cochrane group, which is so 'independent' that it includes White & co who co-wrote the protocol for the review before showing their data to themselves.
     
  8. Yogi

    Yogi Senior Member

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    Andrew Gelman referred to it here

    "This seems reasonable to me, and not in contradiction with the points that Wessely made. Indeed, when I asked Wessely what he thought of this, he replied that an independent review group in a different country had already re-analyzed some of the data and would be publishing something soon. So maybe we’re closer to convergence on this particular study than it seemed."

    http://andrewgelman.com/2016/01/13/pro-pace/
     
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  9. Yogi

    Yogi Senior Member

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    But the Cochrane has already been published.

    They have remained silent and not responded to Tuller with those 20 odd questions, the letter with 42 signatories, the meaction petition. They have not provided the data and been challenging the FOI requests.

    They better not think some dodgy "independent" review done by their friends will placate us and the science community.
     
    Justin30, Sea, Kati and 1 other person like this.
  10. sarah darwins

    sarah darwins I told you I was ill

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    Delay, obfuscate, confuse the issues, divide the opposition … textbook politics.
     
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  11. Sasha

    Sasha Fine, thank you

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    That seems to be a reference to this Norwegian Cochrane group, who are doing an individual patient data meta-analysis:

    http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/full

    The group includes all three of the PACE principal investigators. Weird idea of "independent".
     
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  12. Sasha

    Sasha Fine, thank you

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    There are two reviews. One (published) of aggregated data, and one (upcoming) of individual patient data (i.e. raw data).
     
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  13. Yogi

    Yogi Senior Member

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    Confusing.

    Are both being done by Cochrane? Any info on this?

    Edit - I see this states it is the Protocol for the review. I thought it was already published as was dated 1 april 2014
     
  14. BurnA

    BurnA Senior Member

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    I think Wessely was doing his usual faux sincere act and Gelman fell for it.
     
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  15. Cheshire

    Cheshire Senior Member

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    Two of the researchers not directly involved in the PACE trial have shown a constant and unfailing sense of independance:

    Alison Wearden "the thing I did that I’m most proud of is I ran a large treatment trial of pragmatic rehabilitation treatment for patients with chronic fatigue syndrome, which is a quiet controversial condition and it’s poorly understood and it’s been quite difficult to treat. We successfully carried that trial out and found a treatment that improved patients’ fatigue, so that’s probably the thing that I’m most proud of." Talking about the FINE trial... http://psychologyatmanchester.edubl...wearden-by-as-level-work-experience-students/

    Rona Moss-Morris The PACE trial is "a robust study" http://www.sciencemediacentre.org/e...nts-for-cfsme-and-accompanying-comment-piece/
     
    Last edited: Apr 8, 2016
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  16. MEMum

    MEMum Senior Member

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    Has anyone approached the owners of the Lancet? Is it Elsevier? @Jonathan Edwards
     
  17. sarah darwins

    sarah darwins I told you I was ill

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    Rona Moss-Morris also worked on the FINE trial, yes?
     
  18. Esther12

    Esther12 Senior Member

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    I don't think so. Prof Richard Morriss was.
     
  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Various professionals have sent letters to the Lancet (including myself) co-ordinated by David Tuller.

    I rather suspect that the key step in this process will be the review of the appeal in the Freedom of Information case in a fortnight. I am reasonably optimistic that it might rule in favour of release of data. I doubt PLOS ONE will have the guts to follow through but the pressure from Coyne is useful.
     
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  20. acer2000

    acer2000 Senior Member

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    It seems that if this trial was set up correctly from the beginning with blinded and anonymized data sets this wouldn't be an issue? They were (at one point) claiming they couldn't release the data because they didn't want to disclose identities of participants I think. Which doesn't make any sense to me. Why didn't they get consent for this stuff and organize it correctly to begin with?
     

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