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House of Commons Library: Myalgic Encephalomyelitis treatment and research. Debate pack. (June 2018)

Discussion in 'General ME/CFS News' started by Tom Kindlon, Jun 20, 2018.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Jun 20, 2018
    #1
    Joh, Sean, alktipping and 9 others like this.
  2. Trish

    Trish Moderator Staff Member

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    I've glanced through it. It looks like a librarian has been asked to produce a pack and has cobbled together everything they could find recently in the UK about ME. I mish-mash of good and bad.

    I can't imagine any MP's wading through it.

    The links at the end include one for ''Association for ME'', which looks like someone's blog. I've glanced at it, and it's management section emphasises the ''general agreement'' that psychological counselling is ''a very important part of ME treatment.'' Oh dear.
     
    Trish, Jun 20, 2018
    #2
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  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    I have to admit to feeling a sense of dread going through this, but it didn't seem too bad. I feel some sympathy to the authors if they were new to a topic where no-one agrees about anything, and it seems that they responded to the uncertainty by saying as little as possible about ME/CFS or how to treat it, instead just quoting some views from others. Probably the wise response?

    There are bits I think could have been clearer, eg I think that 'some' should have been inserted here:

    "The PACE trial authors have defended the results of the trial18 and have responded to [some] criticisms in medical journals19 and on the PACE trial website.20"

    Ideally they would have gone into some of the details of the problems with PACE, but I guess that if they'd attempted that there's a fair chance that they would have mucked it up.

    What does anyone else think? Are my standards too low? That it's not an absolute disaster looks like progress to me.
     
    Last edited: Jun 20, 2018
    Esther12, Jun 20, 2018
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  4. NelliePledge

    NelliePledge Moderator Staff Member

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    skimmed through this
    yes I picked up on that weird website @Trish I think we might have had a thread about this on PR it is like a mock up website, there isnt anything that tells you about the "organisation" Im going to email the HoC to highlight it isnt a genuine ME charity
     
    NelliePledge, Jun 20, 2018
    #4
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  5. NelliePledge

    NelliePledge Moderator Staff Member

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    ive had a reply saying its been passed to the document authors
    I flagged up the weirdness of that website and also pointed out that ME Research UK and Invest in ME should be on there
     
    NelliePledge, Jun 21, 2018
    #5
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  6. NelliePledge

    NelliePledge Moderator Staff Member

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    response from HoC researcher
    Thank you for taking the time to contact us about the Commons Library debate pack on Myalgic Encephalomyelitis treatment and research. We have decided to remove the link to this website and have republished the document. I include a link to the landing page and updated document below:

    https://researchbriefings.parliament.uk/ResearchBriefing/Summary/CDP-2018-0155
     
    NelliePledge, Jun 21, 2018
    #6
    It's M.E. Linda, Keela Too, Joh and 9 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    that's the one I picked up on at the other place, and someone (might even have been you Trish) came to the conclusion it was done by a student as an exercise............but it's still there.

    (It even used to come up sometimes on links to AfME)

    eta:
    https://forums.phoenixrising.me/index.php?posts/807175/
     
    Last edited: Jun 21, 2018
    Sly Saint, Jun 21, 2018
    #7
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  8. NelliePledge

    NelliePledge Moderator Staff Member

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    I emailed HoC and they removed it @Sly Saint
     
    NelliePledge, Jun 21, 2018
    #8
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