Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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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

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  2. lnester7

    lnester7 Seven

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    And that is how Is done!!!!!
     
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  3. Sasha

    Sasha Fine, thank you

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    Over 2,000 signatures now. Please sign if you haven't already!
     
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  4. Skycloud

    Skycloud Senior Member

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    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!
     
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  5. andyguitar

    andyguitar Senior Member

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    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

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    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.
     
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  7. andyguitar

    andyguitar Senior Member

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    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

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    Yes; I'm looking forward to some new research being published!
     
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  9. andyguitar

    andyguitar Senior Member

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    You got it @Skycloud. New research. And a fresh start for ME.
     
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  10. AlwaysTired

    AlwaysTired Senior Member

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    Signed. My signature shows I live in the US though
     

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