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NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

Discussion in 'General ME/CFS news' started by Andy, Mar 16, 2018.

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Page 13 of 14
  1. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I was at the table last time (in January) with the "thought field therapy foundation" representative. Apart from her original introduction I don't thinks she said another word.
     
    ukxmrv, May 31, 2018
    #241
    alktipping, Hutan, Joh and 7 others like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    do you get expenses for going or something? maybe a professional meeting attender
     
    NelliePledge, May 31, 2018
    #242
    alktipping, ladycatlover, Invisible Woman and 1 other person like this.
  3. ukxmrv

    ukxmrv Senior Member (Voting Rights)

    Messages:
    854
    Their transport costs would have been covered. I gather that they are a "two man band" type husband and wife team. Maybe networking or to spread news about their work?

    At least they weren't pushy
     
    ukxmrv, May 31, 2018
    #243
    alktipping, Hutan, Joh and 5 others like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    if they post about it on social media or put on their website theyre on a a NICE meeting gives an element of credibility to what theyre doing #cynicismalert might as well have whats his face from LP there as a stakeholder
     
    NelliePledge, May 31, 2018
    #244
    alktipping, MEMarge, ladycatlover and 4 others like this.
  5. Trish

    Trish Moderator Staff Member

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    It sounds like there really should be some better way of filtering who has a genuine reason to be at such a meeting. That person was taking a seat at a meeting that could have gone to another rep. from a genuine organisation with knowledge and experience relevant to ME.
     
    Trish, May 31, 2018
    #245
    alktipping, Hutan, adambeyoncelowe and 6 others like this.
  6. NelliePledge

    NelliePledge Moderator Staff Member

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    from the list assuming the NHS reps from Royal Free, Liverpool, Bath , Alder Hey, Oxford are from CFS clinics........
     
    NelliePledge, May 31, 2018
    #246
    alktipping, adambeyoncelowe, ladycatlover and 1 other person like this.
  7. Andy

    Andy Committee Member

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    Link to ME Research UK feedback in a Facebook post.
     
    Andy, May 31, 2018
    #247
    Skycloud, ladycatlover, Esther12 and 4 others like this.
  8. OverTheHills

    OverTheHills Senior Member (Voting Rights)

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    I can't open this ( I can get to the MERUK page). Perhaps I am not Facebooky enough. Was it particularly interesting?
     
    OverTheHills, May 31, 2018
    #248
    MEMarge and Invisible Woman like this.
  9. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I think the link @Andy posted was a link from the facebook page to the MERUK page, rather than to facebook.
     
    Invisible Woman, May 31, 2018
    #249
    MEMarge and OverTheHills like this.
  10. Andy

    Andy Committee Member

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    The important bit is
     
    Andy, May 31, 2018
    #250
    alktipping, Hutan, Joh and 8 others like this.
  11. Andy

    Andy Committee Member

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    Andy, May 31, 2018
    #251
    Hutan, Daisymay, Joh and 9 others like this.
  12. OverTheHills

    OverTheHills Senior Member (Voting Rights)

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    Location:
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    Thanks for posting that @Andy that's good to know she made the useful suggestion of a Warning Notice now.

    (@Invisible Woman I followed Andy's link to the MERUK page and then to the download of Sue waddles report, but for some reason although it would download, it wouldn't open for me on my tablet. Don't know why, frankly don't care much. Sorry I wasnt very clear previously, it's early here and the fog is dense with this one):asleep:o_O:thumbup:
     
    OverTheHills, May 31, 2018
    #252
    alktipping, adambeyoncelowe, Invisible Woman and 2 others like this.
  13. Amw66

    Amw66 Senior Member (Voting Rights)

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    6,308
    But very useful if you can measure it in different " modes" - was this not one of the many issues in PACE?
     
    Amw66, May 31, 2018
    #253
    alktipping likes this.
  14. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    1,522
    I think we should seen the draft notes recorded by the 6 table note takers (Royal College lady in my case) BEFORE it is submitted for consideration by Chair and NICE to redraft guideline ahead of the consultation. Just in case anything was incorrectly recorded or misconstrued...
     
    Suffolkres, Jun 1, 2018
    #254
    alktipping, mango, ukxmrv and 3 others like this.
  15. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    That's because it "downloads" as a docx file- that's .docx for you- lack of compatibility in my experience.
     
    Suffolkres, Jun 1, 2018
    #255
    alktipping, OverTheHills, Invisible Woman and 1 other person like this.
  16. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Yeah, .docx is a pain in the proverbial. Everyone should set their save options to .doc automatically. It makes files so much easier to open.
     
    adambeyoncelowe, Jun 1, 2018
    #256
    alktipping, Indigophoton, Joh and 2 others like this.
  17. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Better still, of course, is PDF. It's supposed to be portable, by definition.
     
    adambeyoncelowe, Jun 1, 2018
    #257
    alktipping, Indigophoton and Invisible Woman like this.
  18. ukxmrv

    ukxmrv Senior Member (Voting Rights)

    Messages:
    854
    It's a real pity that we couldn't have had a better summing up at the end to see if they included the salient points. Wasn't enough time to do justice to all the different topics raised though.

    The draft Scope didn't bare any resemblance to the issues raised by my group in the first meeting. It does appear as if these stakeholder exercises are ignoring the patient and carer input or very selective hearing.

    At my table there was push to explain the "wide umbrella" part of the Scope as coming from the 1st workshop as a consensus so there may either be willful blindness to the lack of agreement on this. The person claiming this also forgot that I was at their table during the first meeting....
     
    Last edited: Jun 1, 2018
    ukxmrv, Jun 1, 2018
    #258
    alktipping, ladycatlover, Gecko and 3 others like this.
  19. NelliePledge

    NelliePledge Moderator Staff Member

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    Sue Waddle mentions that she's been pressing NICE for a Warning Notice about GET is this a formal thing at NICE i tried searching for it but couldnt get anything useful - anyone got a link?
     
    NelliePledge, Jun 1, 2018
    #259
    ladycatlover, adambeyoncelowe, Daisymay and 1 other person like this.
  20. ukxmrv

    ukxmrv Senior Member (Voting Rights)

    Messages:
    854
    Maybe it was through ForwardME or the APPG?

    There has been talk around a card similar to the one to report drug side effects to be used for GET harms.

    I heard this mooted at the APPG but a long time ago now.
     
    ukxmrv, Jun 1, 2018
    #260
    ladycatlover and Invisible Woman like this.
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