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Petition: #MEAction: Publish the NICE ME/CFS Guideline Now

Discussion in 'Petitions' started by Andy, Aug 19, 2021.

  1. Andy

    Andy Committee Member

    Messages:
    17,469
    Location:
    Hampshire, UK
    "We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form.

    People with ME are depending on the finalised guideline to transform the care they receive: ensuring accurate diagnosis, appropriate symptom management, and access to the best support available.

    However certain medical Royal Colleges have informed NICE they will refuse to implement these improved guidelines. They demand that graded exercise therapy is included as a recommended treatment. Yet evidence demonstrates this harms most people with ME, and all evidence supporting use of this therapy was deemed to be of low or very low quality by the independent NICE guideline committee.

    With less than one day to go, NICE capitulated to these vested interests and delayed publication.

    This three year, multi-million pound, pre-defined process has assessed all available evidence in depth, and given ample opportunity for the Royal Colleges to respond to consultations. NICE confirms it “has used its usual rigorous methodology and process in developing this guideline.”

    The power and beliefs of a few must not stand in the way of evidence.

    We urge NICE to take the courageous and ethical step of publishing the finalised ME/CFS guideline immediately, and call on the Royal Colleges to work collaboratively with patient organisations to implement it."

    https://www.change.org/p/the-nation...ellence-publish-the-nice-me-cfs-guideline-now
     
  2. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    5,333
    we don't know what is in the current form - and those that do are under embargo. Be careful what you wish for.
     
  3. Simbindi

    Simbindi Senior Member (Voting Rights)

    Messages:
    2,279
    Location:
    Somerset, England
    The new one is more neutrally worded and I am presuming that MEAction was a stakeholder in the guidelines so will have seen the final version. I was more comfortable asking family members to sign the latest one for this reason (though don't know if they will actually bother, they have no interest in my ME now I am housebound and can't go out to visit them).
     
    alktipping, Louie41, Michelle and 7 others like this.
  4. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    4,770
    Location:
    Australia
    Indeed. On balance I think it better to publish it. But nervous about doing that too. :confused:
     
  5. Simbindi

    Simbindi Senior Member (Voting Rights)

    Messages:
    2,279
    Location:
    Somerset, England
    I think after what the Royal Colleges have done any compromises that have been made in the final draft from a patient perspective could be challenged as just that: 'compromises unsupported by the evidence, made to help achieve a consensus'. In some ways this might leave the door open for the 2021 guideline to be firmed up in future reviews, especially as more biological science is done.

    I would also like to see our charities working with all the new/updated ME/CFS services to work out methods of recording objective improvements, deterioration and harms. So that we have much more robust evidence of outcomes from these clinics going forward.
     
  6. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,537
    Location:
    UK
    I've signed, now over 390. Aiming for 500 asap
     
  7. Gecko

    Gecko Senior Member (Voting Rights)

    Messages:
    258
    Location:
    England
    If NICE don't publish the new guideline we are stuck with the old one indefinitely. Our community needs to see it. NICE have played right into the hands of the Royal Colleges by delaying - they hold every ounce of power to make it worse now unless NICE reverse their decision.
     
    alktipping, JellyBabyKid, Joh and 9 others like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    7,827
    Location:
    UK
    shame we can't do a Crawley and add the signatures from the other petition to this one.
     
  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    2,867
    Do we actually know the legal status of both the old and the new guidelines? Given the new guidelines went through every step of being adopted except publication, presumably the old ones have been declared in some way inadequate and the new ones also have some sort of legal standing.

    I would suggest we are now in some sort of limbo state without any actual guidelines.
     
    Wits_End, Kirsten, alktipping and 8 others like this.
  10. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    10,251
    Location:
    UK West Midlands
  11. Hutan

    Hutan Moderator Staff Member

    Messages:
    20,424
    Location:
    Aotearoa New Zealand
    I've signed and will be encouraging people I know to sign it, as what happens with the NICE guideline affects people with ME/CFS everywhere.

    Does anyone know, can organisations like patient charities sign, or is it only individuals?

    Over 1500 now.
     
  12. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    10,251
    Location:
    UK West Midlands
    @Gecko maybe can help?
     
  13. Simbindi

    Simbindi Senior Member (Voting Rights)

    Messages:
    2,279
    Location:
    Somerset, England
    I think these petitions are aimed at individuals, but certainly accept and welcome international participation where this affects them too. So worth sharing on social media and amongst all ME/CFS charity/group membership around the globe.
     
  14. Gecko

    Gecko Senior Member (Voting Rights)

    Messages:
    258
    Location:
    England
    Aimed more at individuals but if you want to sign as an org more than happy for you to put in the organisations name and if so I'd email uk@meaction.net to let us know - doubt we're gonna manage to comb through all signatures to find the orgs.
     
  15. Hutan

    Hutan Moderator Staff Member

    Messages:
    20,424
    Location:
    Aotearoa New Zealand
    Over 3000 already.
     
  16. Simbindi

    Simbindi Senior Member (Voting Rights)

    Messages:
    2,279
    Location:
    Somerset, England
    I'm waiting until tomorrow to sign as I'm not up to composing a suitable comment to add today, but I want to do this. The quality of comments on this petition seem more 'useful' than the ones on the first petition. More comments being made by patients who are fully aware of the background issues, the science etc.
     
  17. Simbindi

    Simbindi Senior Member (Voting Rights)

    Messages:
    2,279
    Location:
    Somerset, England
    A comment from an Australian signee
    @rvallee
     
    Ash, alktipping, geminiqry and 16 others like this.
  18. Andy

    Andy Committee Member

    Messages:
    17,469
    Location:
    Hampshire, UK
    Now on 4,108 signatures.
     
    alktipping, MSEsperanza, Joh and 8 others like this.
  19. Daisy

    Daisy Senior Member (Voting Rights)

    Messages:
    299
    Location:
    Suffolk
    Now over 5,000.
     
    Gecko, MSEsperanza, Joh and 5 others like this.
  20. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,252
    Are you saying you prefer for it not to be published?
     

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