1. The 'News in Brief' post for w/c 4th Nov can be read by clicking here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    1,763
    Likes Received:
    14,661
    I'll just leave this here:

     
    JaimeS, Joel, Dolphin and 9 others like this.
  2. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    2,172
    Likes Received:
    14,422
    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
  3. Skycloud

    Skycloud Senior Member (Voting Rights)

    Messages:
    1,793
    Likes Received:
    13,438
    Location:
    UK
    'Possible duress' would be unacceptable and would be for the chair and vice chair to deal with.
     
    JaimeS, NelliePledge and ladycatlover like this.
  4. JohnTheJack

    JohnTheJack Moderator Staff Member

    Messages:
    2,653
    Likes Received:
    13,135
    Yes, agreed. I think we need to be very careful with regards the patient members. It's why I was purposely a bit vague.
     
    Hutan, JaimeS, MSEsperanza and 9 others like this.
  5. Russell Fleming

    Russell Fleming Established Member (Voting Rights)

    Messages:
    97
    Likes Received:
    1,363
    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.
     
    Hutan, Binkie4, Sean and 21 others like this.
  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    4,150
    Likes Received:
    24,993
    Hutan, Binkie4, ladycatlover and 13 others like this.
  7. Andy

    Andy Committee Member & Outreach

    Messages:
    7,867
    Likes Received:
    57,573
    Location:
    Hampshire, UK
    Nope, not received anything from NICE today (I'm the S4ME point of contact as the forum is a stakeholder).
     
  8. Andy

    Andy Committee Member & Outreach

    Messages:
    7,867
    Likes Received:
    57,573
    Location:
    Hampshire, UK
    Just received an email from NICE
    which doesn't appear to be the email that you were expecting @Russell Fleming ?
     
  9. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    1,719
    Likes Received:
    8,555
    No mention of one or two physicians so they presumably have been picked.
     
  10. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,063
    Likes Received:
    6,520
  11. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,063
    Likes Received:
    6,520
    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?
     
  12. Gday!

    Gday! Established Member

    Messages:
    14
    Likes Received:
    165
    Dr Weir has been appointed to the committee with full voting rights
     
    Hutan, Joel, Indigophoton and 28 others like this.
  13. It's M.E. Linda

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

    Messages:
    311
    Likes Received:
    2,462
    Where did you find this out please?!
    Brilliant news.
     
  14. Gday!

    Gday! Established Member

    Messages:
    14
    Likes Received:
    165
    Dr Weir phoned Hope for ME N Ireland charity and they have just posted it.
     
  15. It's M.E. Linda

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

    Messages:
    311
    Likes Received:
    2,462
    Thank you!
     
    MEMarge, ladycatlover, Trish and 4 others like this.
  16. JoanneS

    JoanneS Established Member

    Messages:
    16
    Likes Received:
    99
    Hope 4 ME and Fibro N. Ireland Facebook page
     
  17. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    950
    Likes Received:
    9,148
  18. Gday!

    Gday! Established Member

    Messages:
    14
    Likes Received:
    165
    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.
     
    Joel, MEMarge, Forestvon and 8 others like this.
  19. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    2,804
    Likes Received:
    13,483
    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.
     
    Joel, Indigophoton, MEMarge and 16 others like this.
  20. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    910
    Likes Received:
    6,397
    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
    Hutan, Binkie4, andypants and 4 others like this.

Share This Page