Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

PACE FOI to D of H turned down, but may provide info on current QMUL spin?

Discussion in 'General ME/CFS News' started by Esther12, Jan 8, 2017.

  1. Esther12

    Esther12 Senior Member

    Just saw this FOI:

    It looked to me like some of the content of this might have come from QMUL? Hard to say.

    The FOI was not that carefully phrased (we need training for everyone who wants to make FOI requests!), but it is an interesting idea to use the FOI to find out how what views on the PACE trial other areas of the Establishment have been passing around to each other. Really, we need journalists who are familiar with how to make the most of the available tools to start digging in to this.
    barbc56, MEMum, Dolphin and 4 others like this.
  2. CCC

    CCC Senior Member

    FOI requests are an art form. You have to be very specific so you limit the scope of the request and avoid the perception of it being a fishing trip (this is the vexatious argument QMUL tried to run with initially). You also need to not be too specific so you don't end up with a legitimate 'no'.

    Using FOI in the way you have suggested would need to be worded very carefully, in Australia at least, to avoid a refusal on the basis of (a) privacy or (b) who owns the record or (c) relevancy to the organisation.
    barbc56, Esther12 and Invisible Woman like this.
  3. user9876

    user9876 Senior Member

    What would be interesting is the e-mail trail between QMUL and the Dept of health as there has clearly been a lot of behind the scenes lobbying. Also any briefing documents produced by ministers.

    The reply could be taken as that they know that there may be issues and that they are choosing not to look. They dismiss the reanalysis because it was on a blog but their statement suggests that they know that it says something different and they are choosing not to look further.
    Esther12, MEMum, Dolphin and 4 others like this.
  4. sarah darwins

    sarah darwins I told you I was ill

    Cornwall, UK
    .. and perhaps add the Department of Work and Pensions into that mix, as they co-funded PACE and have a major vested interest.
  5. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    This is a straight-up lie. Given George Jenson explicitly linked to the peer-reviewed reanalysis.

    It seems their response is either a deliberate lie, or was written before the 14th of December, ie BEFORE George submitted the FOI.
  6. Barry53

    Barry53 Senior Member

    So what has to be done to get the re-analysys validated? Clearly needs to be a goal to aim for surely.

    Is this tacitly advocating people try to get the NICE guidelines updated? Or is it just a deliberate invitation to fail?
  7. AndyPR

    AndyPR Senior Member

See more popular forum discussions.

Share This Page