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FOI to QMUL: Action as a result of the admission the PACE analysis was misleading?

Discussion in 'General ME/CFS Discussion' started by Esther12, Nov 19, 2016.

  1. Esther12

    Esther12 Senior Member

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    https://www.whatdotheyknow.com/request/action_as_a_result_of_the_admiss

    Will be interesting to see what, if anything, gets released.
     
  2. barbc56

    barbc56 Senior Member

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    Just to play devil's advocate, if these researchers don't think there are "flaws"or "misleading claims" then that's the part of the message that will stand out to them and the point of the message is more likely to be lost. This ties into their misperception that the request is "vexatious".

    They just don't get it and that's what makes all this so frustratingly difficult to sort out. I think this is a huge obstacle when we try to make a point.

    I'm wondering if leaving out words such as "major flaws", "misleading claims" and simply making an emphatic request(s) that information is wanted might be more effective in the long run and save such phrases for another venue.

    We need to persevere and not back down but at the same time be cognizant of their mindset.

    My statements are more about PR strategies as I definitely applaud the request.

    Thanks to @Esther12 for keeping us updated.
     
  3. Esther12

    Esther12 Senior Member

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    It's pretty difficult for anyone to claim in good faith that there were no flaws or misleading claims, but in some ways it doesn't seem the most carefully of phrased FOI requests. That could help lead to a revealing response though.

    Having QMUL say that they are not aware of any flaws or misleading claims would be pretty interesting in itself. The response from QMUL as an institution, as opposed to from just White, is going to be worth watching. PACE is indefensible in so many ways, but it's not clear that QMUL has conducted any sort of independent investigation into this. I'm not sure if they realise that an attempt to avoid acknowledging the problems here could lead to trouble for them for years and years to come.
     
  4. barbc56

    barbc56 Senior Member

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    Ah, I didn't pick up that this is addressed to an institution and not a person. Different ballgame. I get all these acronyms mixed up and living in a different country sometimes doesn't help my addled mind picking up on these things. So I certainly appreciate any clarification.

    Thanks!
     
    Esther12 likes this.
  5. user9876

    user9876 Senior Member

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    I think the question is have others in QMUL raised any concerns. QMUL were happy to spend money backing PACE but did any academics raise concerns etc. It would be concerning if no one did because it suggests the didn't bother to look at the quality of research before trying to suppress research and stigmatize patients.
     
  6. Esther12

    Esther12 Senior Member

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    Response from QMUL saying they have no information.

    https://www.whatdotheyknow.com/requ...dmiss?nocache=outgoing-604920#outgoing-604920

    I wonder if they're using the rather loose phrasing of the request to avoid giving out information.

    That person has also made a number of other FOI requests about the PACE trial that can be seen by going to his profile, but I couldn't see any useful info being released on them so far.

    There's also been this PACE FOI that seemed to request a lot of info already released: https://www.whatdotheyknow.com/request/pace_results_for_cfs_do_they_app#incoming-756841

    There's also been this new FOI:

    https://www.whatdotheyknow.com/request/fraudulent_action_by_qmul#incoming-903354

    QMUL argue that this forum is the nexus of vexatious FOI requests... if any requesters are reading I would like to thank them for trying to gain the release of useful PACE info, but also encourage real care with the way FOIA requests are posed, to try to avoid anything that could seem polemical. To me it seems best to try to use the language of the organisation you are requesting info from, and focus on just making clear exactly what info you're after (to leave no wriggle room).

    It's possible the QMUL administration are genuinely unaware of the fact that misleading claims were made by the PACE trial's researchers! eg: Instead of talking about 'misleading' claim, it could be better to talk about protocol deviations?

    I don't really know, and I should probably make my own requests if I think I can do a better job, but I am very nervous about the way QMUL has tried to use very minor mistakes/misphrasings in some requests to try to dismiss all PACE FOI requests... if not for the impressive work of Matthees they probably would have got away with that. When dealing with UK organisations, it's worth being extra gentle imo, and realising how much prejudice is still against us.
     
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  7. Daisymay

    Daisymay Senior Member

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    There has been no "good faith" shown by QMUL, the authors, those funding the trial or those publishing the trial. I have no expectation of any of them now showing good faith.
     
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  8. Esther12

    Esther12 Senior Member

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    No - that does make it more difficult, and more important, to try to get things right. We need an advisor!
     
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  9. slysaint

    slysaint Senior Member

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    I love the way it's addressed to
    'Dear Queen Mary, University of London,'
    sadly she died some time ago and I don't think she ever lived at the University of London:D
     
    Daisymay, trishrhymes and BurnA like this.

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