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

Discussion in 'General ME/CFS News' started by Andy, Oct 16, 2018.

  1. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Not with it enough to look back through this thread but someone earlier suggested that the issues arround the individuals with clear financial conflicts of interest (eg marketing training re MUS), etc need specifically addressing, as NICE policies should exclude them from sitting. This is a different proceedural point to the overall concerns about bias and it was suggested that mixing the two together could cloud the issue.
     
    JaimeS, MEMarge, Skycloud and 5 others like this.
  2. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Any one willing to take on responsibility for drafting this?

    I agree an S4ME group letter would be a good idea.
     
    JaimeS, rvallee, ladycatlover and 2 others like this.
  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I had a surprise birthday party yesterday, that was great, but ... ... So do not at present have the intellectual capacity, but if no one takes it on I will later (after some more sleep) go through this thread to pick out the relevant information.
     
  4. Sasha

    Sasha Senior Member (Voting Rights)

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  5. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Here is the body of the MEAction suggested draft for people to adapt to send to NICE

    Although very relevant, the MEAction approach allows NICE to potentially mix the issues of bias and with conflicts of interest as defined by themselves. The feeling of those commenting here seems to lean towards dividing the two, trying to deal with formal conflicts of interest now, but addressing the overall bias when the full committee is announced.
     
  6. MEMarge

    MEMarge Senior Member (Voting Rights)

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  7. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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  8. JaimeS

    JaimeS Senior Member (Voting Rights)

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  9. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    With regard to the BPS-biased committee members, I just wondered who will actually be in charge of screening and assessing the material on which the committee will base their discussions and decisions?

    The NICE manual mentions diverse people who seem not to be supervised by the committee:

    https://www.nice.org.uk/process/pmg...overview#main-stages-of-guideline-development

    https://www.nice.org.uk/process/pmg20/chapter/reviewing-research-evidence

    Do we have to consider this at this stage regarding how to ensure that those people will do their jobs properly?
     
    Last edited: Nov 7, 2018
    Sean, Esther12, Binkie4 and 3 others like this.
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I do not think this is a major concern. Peter barry assured people present at the scoping meet that in this case whatever the committee members thought needed considering should be included. I have reason to think he is sincere about this. There will be members of the committee who may want to bring in published material that has not been identified by the technical staff.

    I will be acting as an expert witness for the committee - I have now received an official invitation and signed my forms. I will also try to ensure that relevant material is brought to members' attention.
     
  11. Amw66

    Amw66 Senior Member (Voting Rights)

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    Great news thank you
     
  12. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    So it was definitely worth the phone call to the RCP lady on the day of the interviews it seems..... Great news!
     
    Hutan, SarahandElly, JaimeS and 11 others like this.
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes, thank you, @Suffolkres.

    It seems that my application had not been exactly forgotten but that phone call precipitated a usual dialogue that helped a lot in reaching a sensible outcome.
     
  14. Daisybell

    Daisybell Moderator Staff Member

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    Thank you Jonathan- I’m sure I speak for us all when I say that your involvement is greatly appreciated. I’ve no doubt you will make a difference.
    I’m so grateful for your ongoing interest and tenacity!
     
  15. Sasha

    Sasha Senior Member (Voting Rights)

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    Fantastic news (though it would have been even more fantastic if they had actually appointed you to the committee).

    What determines when or how often you get called in to give evidence/opinion?
     
  16. JemPD

    JemPD Senior Member (Voting Rights)

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    Oh thank God!!! at least there will be one non-lay sensible voice being heard!
     
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think this may be the most useful arrangement.

    I have no idea exactly what I will be asked to do.

    There will be a few more than that.
     
  18. strategist

    strategist Senior Member (Voting Rights)

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    When will the review take place?
     
  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Over the period, roughly, Feb 2019 - Sep 2020 I would guess, via a series of committee meetings. What I do not know is whether the tech team have already been working on literature searches or whether nothing starts until the committee is appointed.
     
  20. Russell Fleming

    Russell Fleming Established Member (Voting Rights)

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    More news from NICE about other committee appointments expected tomorrow (Thurs. 8th November). Anyone working on, or sending, letters might want to wait until then.
     

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