The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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Info obtained using FOI on PACE Trial application for funding in 2002

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 27, 2017.

  1. Dolphin

    Dolphin Senior Member

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  2. Dolphin

    Dolphin Senior Member

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    I'm attaching the PACE Trial Identifier that was released more than a decade ago. I'm not sure how the two documents compare.
     

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  3. Dolphin

    Dolphin Senior Member

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  4. Esther12

    Esther12

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    Looks like they've redacted all of the stuff from Action for ME.

    Action for ME need to start being open about their past actions and mistakes before people will be able to trust them again. It would be interesting to see the MRC's justifications for their redactions.
     
    Last edited: Sep 27, 2017
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  5. JohntheJack

    JohntheJack Senior Member

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    Swansea, UK
    Though it does state AfME were paid a consultancy fee, which I had not known.

    Edit: or at least such a fee was budgeted for.
     
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  6. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    Four things really strike me about this doc.

    First, the main PIs' research records were pretty humble prior to PACE. They really made their careers on PACE.

    Second, I find it incredibly odd that the information about other sources of funding available for the project was redacted. How can they justify hiding such information? One is left to infer that they are hiding DWP or insurance industry support.

    Third, why is so much of the document redacted? What could be sensitive about a description of the proposed project? The only information that should be redacted is personal information. @Esther12, how can you tell its AfMe stuff?

    Fourth, even what's left in this doc shows the AfME's complicity in this trial in all its shame. They would have been better to refuse to be involved. They allowed themselves to be used in a rubber stamping exercise. This is another lesson in the long lines of lessons about why patient organisations should stay out of the Big Tent. This enables them to be misused, to support researchers' claims that they had 'patient consultation'.

    @charles shepherd, I hope the MEA is fully aware of how being part of the CMRC could be misused against patients. Getting out sends a strong message, that this research collaboration does not have patient support.
     

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