Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Petition: Appeal to NICE concerning the Guideline Committee for ME/CFS

Discussion in 'Petitions' started by Sasha, Jan 16, 2018.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    12,812
    Likes:
    34,311
    UK
  2. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

    Messages:
    2,774
    Likes:
    4,067
    USA
    And that is how Is done!!!!!
     
    JohntheJack and andyguitar like this.
  3. Sasha

    Sasha Fine, thank you

    Messages:
    12,812
    Likes:
    34,311
    UK
    Over 2,000 signatures now. Please sign if you haven't already!
     
    JohntheJack, andyguitar and MEMum like this.
  4. Skycloud

    Skycloud Senior Member

    Messages:
    497
    Likes:
    2,418
    UK
    The influence of the NICE guidelines has an international reach with many other countries either basing their own guidelines on NICE or adopting it wholesale.

    GET and CBT are no longer recommended by the NIH in the USA; let's knock down another pillar!
     
    andyguitar likes this.
  5. andyguitar

    andyguitar Senior Member

    Messages:
    632
    Likes:
    953
    South east England
    Well in my humble opinion the new Nice guidelines may contain some suprises ie GET and CBT get the boot.
     
  6. Skycloud

    Skycloud Senior Member

    Messages:
    497
    Likes:
    2,418
    UK
    I hope you are right; we are in with a chance of achieving this. However, the arguments against PACE aren't fully accepted yet in the UK and there will be an incentive to retain GET and CBT in some form given the investment in specialist clinics so far, paltry as it is; and the philosophy behind them.

    It will also go against the grain for the committee to recommend only symptomatic treatment and robust differential diagnosis. There isn't yet a sufficient evidence base to recommend other treatments in the national guidelines. Offering 'nothing' will go against the grain. It is very possible that CBT and GET will be retained with some sort of advisory note. Not quite getting the boot.

    The makeup of the committee is important.

    To those who haven't yet, please sign.
     
    Tally and andyguitar like this.
  7. andyguitar

    andyguitar Senior Member

    Messages:
    632
    Likes:
    953
    South east England
    But dont forget it's going to be a long process before the new guidelines are published. A lot can happen in the 2 or so years it will take.
     
  8. Skycloud

    Skycloud Senior Member

    Messages:
    497
    Likes:
    2,418
    UK
    Yes; I'm looking forward to some new research being published!
     
    andyguitar likes this.
  9. andyguitar

    andyguitar Senior Member

    Messages:
    632
    Likes:
    953
    South east England
    You got it @Skycloud. New research. And a fresh start for ME.
     
    Skycloud likes this.
  10. AlwaysTired

    AlwaysTired Senior Member

    Messages:
    174
    Likes:
    246
    Signed. My signature shows I live in the US though
     
  11. Rosa Amor

    Rosa Amor

    Messages:
    32
    Likes:
    65
    Both me and my dad signed but is it still running. Haven't the committee members already been decided? Wish I'd spotted this earlier...
     

See more popular forum discussions.

Share This Page