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NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Sep 20, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    NICE GUIDELINE ON ME/CFS WILL BE UPDATED!

    PUBLISHED TODAY ON THE NICE GUIDELINE WEBSITE:

    Surveillance report 2017 – Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (2007) NICE guideline CG53
    Surveillance decision
    We will plan a full update with a modified scope of the guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (NICE guideline CG53).

    appendix A: pre-consultation summary of evidence from surveillance).

    Following a stakeholder consultation on the proposal to not update the guideline, broader issues with the guideline were highlighted that called into question the guideline scope and its current relevance.

    After further consideration of information from stakeholders including:

    new evidence (see appendix B: summary of evidence highlighted to NICE during consultation,

    and appendix C: stakeholder consultation comments table)

    alongside the evidence identified through the surveillance review,

    NICE has decided to fully update the guideline with a modified scope.

    how we made the decision for further information.



    This page was last updated: 20 September 2017


    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
    Mary, Jennifer J, Roy S and 79 others like this.
  2. Valentijn

    Valentijn Senior Member

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    Excellent news! :thumbsup: Great work to everyone who was involved, even if that was just signing a petition.
     
  3. charles shepherd

    charles shepherd Senior Member

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  4. Cheshire

    Cheshire Senior Member

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    Wow
    At least they are taking into account studies that seriously question the Oxford criteria and the efficacy of CBT/GET (amongst them @Keith Geraghty Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys).

    Huge thanks to all involved!
     
  5. Skippa

    Skippa Anti-BS

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    Huzzah! Hurrah! Zippa dee doo daaa!

    Now the mission becomes: make it change in the RIGHT (correct) direction!

    The battle is won... but the war is far from over!
     
    Mary, Jennifer J, Jo Best and 24 others like this.
  6. Hutan

    Hutan Senior Member

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    New Zealand
    Scope for (very) cautious optimism? Here are some of the more exciting comments from NICE on the findings from the submissions:


    Thanks to all who have contributed to this result.
     
    Mary, Jennifer J, happy and 51 others like this.
  7. Skippa

    Skippa Anti-BS

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    Wow @Hutan what you just highlighted there sounds like (on the face of it) the message ACTUALLY DID get through. Wow.

    Thank you nice people at NICE who are involved to give this due consideration.
     
  8. Valentijn

    Valentijn Senior Member

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    This contains a lot of excellent comments in support of a NICE update, and not only from ME groups. Most of them are very detailed, and cite support for their statements.

    The comments of those opposed to an update are quite minimal and often completely blank. But those organizations may offer a good list of those who would most benefit from educational material and accurate scientific information:
    British Infection Association:

    Royal Liverpool University Hospital, CFS/ME services:


    Royal College of Paediatrics and Child Health:


    Association of British Neurologists:


    Royal College of Psychiatrists:


    University of Manchester - FINE Trial:


    Royal College of Physicians:


    Regional Public Health Agency for Northern Ireland:

    Feedback on removal from the static list is a lot more jumbled. Some don't seem to understand what it entails, and some want it removed from the list so new psychobabble can be incorporated in the near future.
     
  9. Valentijn

    Valentijn Senior Member

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    It is absolutely huge that NICE is acknowledging this:
    Without the Oxford fatigue trials, there is no support for GET or illness-denial CBT.
     
  10. Cheshire

    Cheshire Senior Member

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    Is it the good news you were refering to @Jonathan Edwards ?
    Or can we expect more interesting things this week?
     
  11. Cheshire

    Cheshire Senior Member

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    How we made the decision

    https://www.nice.org.uk/guidance/cg...we-made-the-decision#how-we-made-the-decision
     
    ladycatlover, Woolie, ahimsa and 20 others like this.
  12. A.B.

    A.B. Senior Member

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    It is now very obvious that patients and patient organizations reject CBT/GET and dispute that the evidence shows them to be effective.

    Hopefully heads will roll. PACE authors have inflicted harm on patients first with bad science then with refusing to acknowledge what patients were telling them the whole time. The idea that only a vocal minority was against CBT/GET is another fabrication by them.
     
    ladycatlover, Jan, Woolie and 35 others like this.
  13. Valentijn

    Valentijn Senior Member

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    NICE is rating some of the submitted evidence from the comments as being relevant to changing the guidelines for diagnosis and treatments. In general, it undercuts the use of Oxford, and recommendations for CBT/GET:
    evidence summary 1.jpg

    evidence summary 2.jpg

    evidence summary 3.jpg

    I think the psychobabblers are starting to look pretty screwed, this time around :D
     
    ladycatlover, Jan, Barry53 and 34 others like this.
  14. trishrhymes

    trishrhymes Senior Member

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    I celebrate the decision to review and am very grateful for all the organisations who made this happen, but...

    with the organisations representing Neurologists, Psychiatrists and Physicians all opposing update and clearly supporting the BPS model and GET/CBT, we are really up against it.

    So who is actually going to do the review?

    If it's the same people as before, change won't happen.
     
    Last edited: Sep 20, 2017
  15. Demepivo

    Demepivo Dolores Abernathy

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    Team PACE & Crawley will be fuming :D
     
    ladycatlover, Jan, Wolfiness and 19 others like this.
  16. Valentijn

    Valentijn Senior Member

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    I was a bit shocked to see that the FINE Trial qualifies as a stakeholder :confused:
     
    ladycatlover, Jan, Barry53 and 15 others like this.
  17. charles shepherd

    charles shepherd Senior Member

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    Official confirmation to NICE guideline stakeholders - just arrived!

    20/09/2017

    [​IMG]
    Level 1A, City Tower
    Piccadilly Plaza
    Manchester
    M1 4BT

    Tel: 0300 323 0140
    Fax: 0845 003 7784

    www.nice.org.uk



    Dear Colleague

    RE: NICE guideline on CG53 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management

    I am writing to let you know that, following stakeholder consultation, we have decided to update this guideline. Information about the decision has been published on our website.

    We would like to thank you for your continued support and your interest in NICE guidelines.

    Kind regards,

    Surveillance Team


    Surveillance Reviews
    NICE Centre for Guidelines
    National Institute for Health and Care Excellence Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United Kingdom
    www.nice.org.uk
     
  18. Cheshire

    Cheshire Senior Member

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    Slowly but steadily, the BPS folks are losing ground.
     
    Lindberg, Barry53, MEMum and 18 others like this.
  19. A.B.

    A.B. Senior Member

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    Hopefully the SMILE trial today will be a public relations disaster. Magic circles, kids being told to fake recovery? WTF.
     
  20. NelliePledge

    NelliePledge plodder

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    Yep this next battle is going to be decisive
     
    Barry53, Somer, MEMum and 11 others like this.

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