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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. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    The answer to my question seems to be yes.

    From Developing NICE guidelines: the manual
     
  2. Gday!

    Gday! Established Member

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    Dr Weir totally supports the biomedical aspects of ME.
     
  3. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    This list provides us with the names of everyone who should be barred from having anything to do with ME patients. They all seem pretty hardline BPS to me so interesting that Holgate was among them. He should really consider his position. Bearing in mind I only started getting educated about ME in the past couple of years interesting how he has repositioned himself as a fence sitter. I think he needs to either make some big apologies for being on the wrong side or shuffle off the scene.
     
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  4. Sean

    Sean Senior Member (Voting Rights)

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    :)
     
  5. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    So what will the community response be now? Is the William weir posting at the very end sweetener/concession enough? Are we still going to send a letter, are we going to accept the make-up of the panel.
     
  6. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    There are still 3 appointments to be made.
     
  7. Russell Fleming

    Russell Fleming Established Member (Voting Rights)

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  8. Trish

    Trish Moderator Staff Member

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    Does this allow him to vote?

    Edit:
    I should read first before asking.
    Dr Shepherd was invited to be a full member of the Guideline committee but because that meant he would have to stop his public statements and advice for the MEA, he decided instead to be a co-opted member which means he will be involved in discussions but not able to vote.
     
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  9. Daisy

    Daisy Senior Member (Voting Rights)

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    I don't think so.
     
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  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    No.

    So would Shepherd have been instead of Chris Burton or Mike Beadsworth?
     
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  11. Cheshire

    Cheshire Moderator Staff Member

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    I am bewildered...
     
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  12. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    No. I have a lot of mixed about this so I’m just putting up various thoughts, not opinion. There obviously has been a lot of behind the scenes stuff and still is if Dr Shepherd is making personal recommendations. I’m assuming there will be no comment from mea on the other members now.
    It might be very good to do what Dr s has done, it might be considered great they are allowing expert charity involvement or it might make no difference if he can’t vote or it might be an establishment way of controlling the response of a major, historically NICE critical charity. With him and Dr Weir there is more” balance” but it is right to have the others on the panel at all with the inevitable compromise and continuation of a broad, diverse approach. Ultimately are we to view the whole process much more positively now than with the original list put up and just let them get on with the next phase as suggested
    There’s also the point of Dr S and Dr W can be members after all, I can’t see why Dr Worthley, Speight or chaudhuri (neurologist) couldn’t.
     
    Last edited: Nov 9, 2018
  13. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I respect Dr. Shepherds decision and understand it was a difficult dilemma, but I think I would have preferred him to become a full member of the committee. We need the votes.

    Edit: Stewarts insightful remarks made me change my mind (see posts below).

    Edit: Charles Shepherds own comments made me doubt my opinion again (see later posts). Apologies for the confusion.
     
    Last edited: Nov 11, 2018
  14. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Some handy NICE definitions included at the end of the MEA statement

    Co-Opted Members
    Expert Witnesses
     
  15. Andy

    Andy Committee Member & Outreach

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    Is this the first 'official' confirmation of Jo's involvement?
     
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  16. Stewart

    Stewart Senior Member (Voting Rights)

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    I agree with you - but from Dr Shepherd's statement it appears that he felt that as a full member he might still need to recuse himself from some of the key discussions and votes. So even as a full member he might not have been able to influence the outcome in some of the most important areas.

    My question is this - if Charles is a co-opted member, does that mean there's another 'Physician with an interest in ME/CFS' still to be announced as a full member of the committee?
     
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  17. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I think this refers to William Weir. Shepherds dilemma was probably the reason why NICE was not sure if there were going to be 1 or 2 extra Physicians with an interest in ME/CFS
     
  18. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Good point. He writes: "as a full committee member, I might also have to remove myself from discussions and decisions in areas where I obviously have a very strong opinion." I think this indicates he would have no voting rights regarding GET/CBT, because he allready published strong opinions about this.

    Not 100% sure about it, but if this is indeed the case, then it would be good news. It could indicate that other members of the committee such as Murphy will also have no voting rights on these matters.

    In that case, Shepherd probably made the right decision.

    Edit: I think I might have made a mistake here, see later posts
     
    Last edited: Nov 11, 2018
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  19. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Absolutely, he should have taken the vote in my view, given what we are up against.
     
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  20. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    But wouldn't the restricted voting rights apply equally to Dr. Weir as a private doctor?

    edit: cross posted with @large donner.
     
    Last edited: Nov 9, 2018
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