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PACE Trial: Another FOI request that was refused

Discussion in 'General ME/CFS News' started by Dolphin, Jan 21, 2013.

  1. Dolphin

    Dolphin Senior Member

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    This is a newly available ruling by the Information Commissioner on a Freedom of Information (FOI) request.

    I think the complainant (the person looking for the data) explains well the different, unusual, changes the PACE Trial team made shifting the thresholds it said it would report on.

    http://bit.ly/10M94M2 i.e.
    http://www.ico.gov.uk/~/media/documents/decisionnotices/2013/fs_50463661.ashx

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    It should not be confused with another ruling by the Information Commissioner on the same FOI request http://bit.ly/13Yvesr i.e.
    http://www.ico.gov.uk/~/media/documents/decisionnotices/2013/fs_50458231.ashx
  2. Dolphin

    Dolphin Senior Member

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    Some quick thoughts for what they are worth.

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    The area is highly politicised not simply because of patients but also because of the proponents of CBT and GET and statements they have made, which can include talk about entitlements to various disability supports incl. disability payments, coercion, safety of therapies, etc.

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    I think the patient representative identities have already been released through the minutes that were already obtained under the FOIA.

    As I recall, Chris Clark was one of them. He was a well-paid chief executive officer of Action for ME and hence it is questionable that he should get some special protection. He wasn't a patient.


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    I'm not sure I understand their point. As a counterpoint, greater access can ensure that poor practices, such as the selective reporting of outcome measures, could be reduced. Academic freedom shouldn't be used to allow poor practice.

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    The results have not been fully reported in the Lancet.

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    Do we have details of this? Peer reviewers will usually spot something, even if it is minor.

    The results of much public scrutiny is that people would like to have the data for the outcome measures in the published protocol.

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    68-72. Is this AfME who are saying this? That's disappointing.


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    In an uncontrolled trial http://www.ncbi.nlm.nih.gov/pubmed/17426416 involving Peter White, CBT was said to bring about full recovery in 23%. If a treatment brings about full recovery, it must have dealt with whatever is currently causing the problem. All CBT deals with is behaviour and thoughts, so that claim is akin to saying that behaviour and thoughts are causing the condition.

    Similarly, this PACE Trial centre (King's College) talked about recovery - discussed in this Co-Cure post: http://bit.ly/Sp7fRJ i.e. https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1212D&L=CO-CURE&P=R2977&I=-3

    And Peter White talked about recovery here: http://bit.ly/V1GMb5 i.e.https://listserv.nodak.edu/cgi-bin/...CO-CURE&P=R2815&I=-3&d=No Match;Match;Matches

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    That court judgement related specifically to the people on the NICE guidelines development group, **not** the PIs of the PACE Trial. The report of the parliamentary group led by Ian Gibson could be quoted on this issue. Probably other things also.

    Regarding the PIs specifically, I think this particular case involving Peter White is an interesting example: http://forums.moneysavingexpert.com/showthread.php?t=2356683
    ukxmrv, Valentijn and Sasha like this.
  3. Esther12

    Esther12 Senior Member

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    Thanks Dolphin. This did look like a stronger submission.

    Sad to see A for ME seeming to be opposed to allowing patients access to this information. They should be pushed to justify this to their members.

    I wonder if we'd have seen those 'scary militant CFS patient' stories if their results had been better? It seems that they're now able to use them to exempt information from FOIs.

    It would be nice to see all the evidence submitted too.
    Dolphin likes this.

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