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NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

Discussion in '2020 UK NICE ME/CFS Guideline' started by Andy, Oct 16, 2018.

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  1. NelliePledge

    NelliePledge Moderator Staff Member

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    I was looking for info on mental capacity following discussion on another thread and discovered Fiona Finlay is heavily involved in this issue as chair of the Mental Capacity Forum https://www.scie.org.uk/mca/directory/forum
     
    NelliePledge, Oct 23, 2018
    #101
    ukxmrv, Inara, ladycatlover and 2 others like this.
  2. Barry

    Barry Senior Member (Voting Rights)

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    Provided of course it doesn't mean a particular view.
     
    Barry, Oct 23, 2018
    #102
    rvallee, ladycatlover and andypants like this.
  3. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I do not think that this is too worrying. Her role within end of life care must raise questions a regarding when her patients have or lose their mental capacity.
     
    MEMarge, Oct 23, 2018
    #103
    andypants, ladycatlover and Andy like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    No I don’t see it as worrying either. hopefully it puts her in a good position to begin to understand the situation severe ME patients can find themselves in when they engage with the NHS.
     
    NelliePledge, Oct 23, 2018
    #104
    inox, andypants, Skycloud and 3 others like this.
  5. Andy

    Andy Committee Member

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    Comment from Action for ME
    https://www.actionforme.org.uk/news/​nice-guideline-scope-and-committeeupdate-and-comment/
     
    Andy, Oct 25, 2018
    #105
    Invisible Woman and andypants like this.
  6. Gecko

    Gecko Senior Member (Voting Rights)

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    The NICE guidelines committee members doc has been updated. See here.

    We now also have
    • Gabrielle Murphy (co-author of PACE)
    • Chris Burton (Sheffield BPS-er)
    • Alan Stanton - a community paediatrician who (if I am correct and I would appreciate anyone who can substantiate this is the same person) took part in trying to get a young person with ME locked on a psychiatric ward when he disagreed with the child's consultant's view that psychiatric care wasn't appropriate. See here: http://news.bbc.co.uk/hi/english/st.../panorama/transcripts/transcript_08_11_99.txt

    I am beyond upset, furious and incredulous.

    I'm uploading this as a file, to keep it somewhere accessible, especially as it appears to be half finished. The Declaration of Interests page is yet to be filled in...

    @dave30th looping you into this as PACE authors are your thing.

    (Editted to bold first sentence so people can more easily scroll through and see that this is new info.)
     

    Attached Files:

    Last edited: Oct 25, 2018
    Gecko, Oct 25, 2018
    #106
    Maggie, Peter Trewhitt, Trish and 20 others like this.
  7. Andy

    Andy Committee Member

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    @Jonathan Edwards , please see post directly above. Doesn't look like we have benefited from delaying any protest at those appointed so far, can you provide any reassurance that there is still good news to come?
     
    Andy, Oct 25, 2018
    #107
    Maggie, Robert 1973, ladycatlover and 16 others like this.
  8. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    854
    It comes down to numbers in the end.

    If the PACE/Psych crowd or their sympathisers or people easily influenced into that area vote together (and these outnumber the patients and people with the same views as them) on evidence and wording then it doesn't matter what the rest think.

    Had long talks at the first stakeholder meeting with NICE and the RCGP's on what would happen and how conflict(s) would be resolved.
     
    ukxmrv, Oct 25, 2018
    #108
    Maggie, Peter Trewhitt, Sebastian and 15 others like this.
  9. NelliePledge

    NelliePledge Moderator Staff Member

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    Putting an actual PACE author on there is ridiculous

    If that’s the case then Keith Geraghty or another of those who’ve authored debunking papers should be on the committee
     
    NelliePledge, Oct 25, 2018
    #109
    Maggie, Peter Trewhitt, Lisa108 and 22 others like this.
  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    This looks absolutely terrible.

    Who decided that these people we fit to sit on this committee?
     
    Esther12, Oct 25, 2018
    #110
    Maggie, Robert 1973, inox and 16 others like this.
  11. NelliePledge

    NelliePledge Moderator Staff Member

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    Do they not realise this isn’t 2007
     
    NelliePledge, Oct 25, 2018
    #111
    inox, ladycatlover, Invisible Woman and 6 others like this.
  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    Chris Burton!? Please tell me this is some appalling joke.
     
    Esther12, Oct 25, 2018
    #112
    Maggie, Sebastian, inox and 10 others like this.
  13. NelliePledge

    NelliePledge Moderator Staff Member

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    Last edited: Oct 25, 2018
    NelliePledge, Oct 25, 2018
    #113
    Maggie, inox, ladycatlover and 9 others like this.
  14. Gecko

    Gecko Senior Member (Voting Rights)

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    Tbh I don't see what good news there could possibly be to combat this.

    Anyone able to confirm that the Alan Stanton appointed is the same guy involved in trying to lock a kid up?
     
    Gecko, Oct 25, 2018
    #114
    ladycatlover, Inara, Invisible Woman and 4 others like this.
  15. Andy

    Andy Committee Member

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    Attached Files:

    Andy, Oct 25, 2018
    #115
    ladycatlover, Inara, Invisible Woman and 7 others like this.
  16. NelliePledge

    NelliePledge Moderator Staff Member

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    I still hope patient members don’t resign need to have people inside this committee to keep NICE on the hook.
     
    NelliePledge, Oct 25, 2018
    #116
    inox, Forestvon, ladycatlover and 7 others like this.
  17. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I'm not arguing for patient members to resign (not yet anyway) but wonder how they can possibly keep NICE on the hook?

    Especially when they will be gagged by confidentiality agreements
     
    ukxmrv, Oct 25, 2018
    #117
    Maggie, Peter Trewhitt, ladycatlover and 10 others like this.
  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    Do we know who was involved in selecting the professional members? Whoever it was seems to fully support the culture of bigotry and quackery that has done so much to harm how ME/CFS patients are treated.
     
    Esther12, Oct 25, 2018
    #118
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  19. NelliePledge

    NelliePledge Moderator Staff Member

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    They won’t be publicly keeping NICE on the hook but they will be in the discussions to highlight the debunking and the patient experience which NICE claims to take seriously now.
     
    NelliePledge, Oct 25, 2018
    #119
    Peter Trewhitt, ladycatlover, Barry and 3 others like this.
  20. Esther12

    Esther12 Senior Member (Voting Rights)

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    Yeah, and then they'll be outvoted.

    I'm not saying they should quit yet, but I think it will be very difficult for them to do much good unless we can get an entirely new committee.
     
    Esther12, Oct 25, 2018
    #120
    Maggie, Peter Trewhitt, ladycatlover and 9 others like this.
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