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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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Page 29 of 43
  1. Sean

    Sean Moderator Staff Member

    Messages:
    9,097
    Location:
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    I'll just leave this here:

     
    Sean, Nov 8, 2018
    #561
    JaimeS, Joel, Dolphin and 9 others like this.
  2. chrisb

    chrisb Senior Member (Voting Rights)

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    4,602
    One can see potential procedural difficulties with a committee in which some members might be considered by others to have special knowledge which they themselves lack, and which is taking evidence from external experts. Is the process to be driven by appraisal of the external evidence and how does one, in such circumstances, prevent the influence and possible duress from the views of members deemed to have relevant expertise?
     
    Last edited: Nov 8, 2018
    chrisb, Nov 8, 2018
    #562
    JaimeS, Invisible Woman, Arnie Pye and 2 others like this.
  3. Skycloud

    Skycloud Senior Member (Voting Rights)

    Messages:
    2,208
    Location:
    UK
    'Possible duress' would be unacceptable and would be for the chair and vice chair to deal with.
     
    Skycloud, Nov 8, 2018
    #563
    JaimeS, NelliePledge and ladycatlover like this.
  4. JohnTheJack

    JohnTheJack Moderator Staff Member

    Messages:
    4,870
    Yes, agreed. I think we need to be very careful with regards the patient members. It's why I was purposely a bit vague.
     
    JohnTheJack, Nov 8, 2018
    #564
    Hutan, JaimeS, MSEsperanza and 9 others like this.
  5. Russell Fleming

    Russell Fleming Senior Member (Voting Rights)

    Messages:
    121
    Well, I am sorry about that. Looks like NICE hasn't been in touch today. Dr Shepherd is away on business but from what I can tell, no other stakeholders received an email today. Until we hear from NICE we can't issue our statement. So, we'll have to hold fire and hope something appears tomorrow.
     
    Russell Fleming, Nov 8, 2018
    #565
    Hutan, Binkie4, Sean and 21 others like this.
  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    10,280
    Invisible Woman, Nov 8, 2018
    #566
    Hutan, Binkie4, ladycatlover and 13 others like this.
  7. Andy

    Andy Retired committee member

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    23,855
    Location:
    Hampshire, UK
    Nope, not received anything from NICE today (I'm the S4ME point of contact as the forum is a stakeholder).
     
    Andy, Nov 8, 2018
    #567
    Binkie4, MSEsperanza, ladycatlover and 9 others like this.
  8. Andy

    Andy Retired committee member

    Messages:
    23,855
    Location:
    Hampshire, UK
    Just received an email from NICE
    which doesn't appear to be the email that you were expecting @Russell Fleming ?
     
    Andy, Nov 8, 2018
    #568
    andypants, MSEsperanza, ladycatlover and 10 others like this.
  9. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    6,484
    No mention of one or two physicians so they presumably have been picked.
     
    Dolphin, Nov 8, 2018
    #569
    andypants, ladycatlover, Barry and 8 others like this.
  10. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,374
    Cinders66, Nov 8, 2018
    #570
    MEMarge, Binkie4, andypants and 14 others like this.
  11. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,374
    NICE and some of the stakeholders were most anticipating of Esther crawleys two studies which will be published as the main new evidence. How do we feel the committee as stands will review it and there seems 4 pediatric specific posts or is it 3?
     
    Cinders66, Nov 8, 2018
    #571
    andypants, MSEsperanza, Esther12 and 3 others like this.
  12. Gday!

    Gday! Established Member

    Messages:
    15
    Dr Weir has been appointed to the committee with full voting rights
     
    Gday!, Nov 8, 2018
    #572
    Hutan, Joel, Indigophoton and 28 others like this.
  13. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

    Messages:
    935
    Where did you find this out please?!
    Brilliant news.
     
    It's M.E. Linda, Nov 8, 2018
    #573
    Indigophoton, MEMarge, SarahandElly and 7 others like this.
  14. Gday!

    Gday! Established Member

    Messages:
    15
    Dr Weir phoned Hope for ME N Ireland charity and they have just posted it.
     
    Gday!, Nov 8, 2018
    #574
    Indigophoton, MEMarge, SarahandElly and 14 others like this.
  15. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

    Messages:
    935
    Thank you!
     
    It's M.E. Linda, Nov 8, 2018
    #575
    MEMarge, ladycatlover, Trish and 4 others like this.
  16. JoanneS

    JoanneS Established Member (Voting Rights)

    Messages:
    80
    Hope 4 ME and Fibro N. Ireland Facebook page
     
    JoanneS, Nov 8, 2018
    #576
    MEMarge, andypants, ladycatlover and 4 others like this.
  17. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,302
    Tom Kindlon, Nov 8, 2018
    #577
    Hutan, Indigophoton, rvallee and 19 others like this.
  18. Gday!

    Gday! Established Member

    Messages:
    15
    Praying for more good people who will work with integrity, I have had enough of all the corruption and profound damage to so many adults, children and families.
     
    Gday!, Nov 8, 2018
    #578
    Joel, MEMarge, Forestvon and 8 others like this.
  19. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,965
    If only Nigel Speight could have the same luck- EC' s studies would have some context provided from someone who acknowledges severe ME in children..
    Great news though.
     
    Amw66, Nov 8, 2018
    #579
    Joel, Indigophoton, MEMarge and 16 others like this.
  20. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    3,035
    Location:
    betwixt and between
    Not able to comment atm - just leave these two links here:

    Edit: re: William Weir - "ME: bitterest row yet in a long saga", The Independent, 25 November 2012 (Wiliam Weir, amog others, protesting against honoring SW with the John Maddox Standing up for Science Prize):
    https://www.independent.co.uk/news/science/me-bitterest-row-yet-in-a-long-saga-8348389.html

    Edit: re: Gabrielle Murphy among the signatories of an open letter protesting against the article about the said protest, IoS letters, emails & online postings (2 December 2012):
    https://www.independent.co.uk/voice...-online-postings-2-december-2012-8373777.html
     
    Last edited: Nov 8, 2018
    MSEsperanza, Nov 8, 2018
    #580
    Hutan, Binkie4, andypants and 4 others like this.
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