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Please sign petition to get NICE to remove CBT/GET from guidelines NOW

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Feb 23, 2018.

  1. Countrygirl

    Countrygirl Senior Member

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    It is important we sign this one to get CBT/GET removed from the NICE guileimes before more people are harmed.

    Please sign it Everyone and share it with friends, family and other ME people.

    Thank you!

    https://www.change.org/p/nice-stop-...re_for_starters_page&utm_content=ex71:control


    Reasons for signing
    [​IMG]
    Anthony Bradstock·6 minutes ago
    Read more" >Whatever happened to "First do no harm" ? PACE trialists WILL be brought to account. You can be part of the solution, or continue to be part of the problem and be dragged down along with Peter White et al.


    [​IMG]
    Laura Whittington·6 minutes ago

    Invest in ME Research, an ME charity which conducts biomedical research into ME have recently requested that NICE retract the existing guidelines and/or edit them to state that they are under review and CBT/GET are no longer recommended treatments. Currently all NHS clinics in England use CBT and GET (or activity management) as recommended treatments. These all follow the "biopsychosocial" (BPS) model of this illness. Dr Mark Baker, Director of the Centre for Guidelines at NICE have responded to a letter from Invest in ME Research saying that ME patients could lose treatment clinics if the guidelines were removed before new guidelines are laid out. He argues that commissioners are seeking every opportunity to disinvest in ME services and would use the lack of current guidelines as an excuse. Given the harm caused by both CBT and GET I agree with Kathleen McCall, the Chairman of Invest in ME Research that it would be an advantage to sufferers if it was stated that the guidelines no longer contain CBT and GET and would therefore open up the possibility that doctors could treat symptomatically and have wider freedom to do so. Currently there are also families who are being forced to accept these treatments even though they are not proven effective and have been proved harmful in most cases. Particularly schools are unsympathetic to low attendance and in my daughter's case even the Hospital School Service base their assumptions on this biopsychosocial interpretation of the illness. This lack of understanding and assumption that the best thing would be to increase or encourage activity is particularly debilitating for an ME sufferer. " data-height="120" data-read_more="Read more" data-render="true" style="box-sizing: border-box; overflow: hidden !important; max-height: none; word-wrap: break-word;">After a review of the PACE trial results NICE have stated that they intend to update their guidelines for the treatment of ME/CFS. The first meetings to discuss review of the guidelines are planned for September or October 2018 and the new... Read more

    ·


    26 have signed. Let’s get to 100!



    [​IMG]
    Robin Brown signed this petition

    Today: Robin is counting on you
    Robin Brown needs your help with “NICE: Sto
     
    Last edited: Feb 26, 2018
    Mary, Forçe e Honra and ScottTriGuy like this.
  2. lnester7

    lnester7 Seven

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    Foreigners ok?
     
    Countrygirl likes this.
  3. NelliePledge

    NelliePledge plodder

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    Yes over 1100 signatures now
     
    Binkie4 likes this.
  4. Countrygirl

    Countrygirl Senior Member

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    Yes, absolutely! It is for both UK and non-UK residents. PACE has damaged ME patients around the world.
     
    Joh likes this.
  5. Countrygirl

    Countrygirl Senior Member

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    2 250 have signed now.

    Please keep promoting this, Everyone!
     
    Forçe e Honra and Binkie4 like this.
  6. Countrygirl

    Countrygirl Senior Member

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    Please keep signing!

    Just a reminder of one of the infernal trio that created this appalling situation:

    [​IMG]
     
    Joh and CFS_for_19_years like this.
  7. NelliePledge

    NelliePledge plodder

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    Hi all please sign and share this petition we should be able to get it up to 5000 it is open for anyone not just U.K. it would be a major step to get movement from NICE on the existing wording on GET/CBT in their guidelines.
     
  8. NelliePledge

    NelliePledge plodder

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    Tom Kindlon has posted on Twitter and Facebook now heading to 3700. Please sign if not already done and remind your contacts. Sometimes people forget to sign or don’t see your posts so reminders are worthwhile.

    This is not a petition to Parliament so open to people outside the U.K.

    @JenB please can you post
     
    Forçe e Honra and Binkie4 like this.
  9. 1gooddog

    1gooddog Senior Member

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    Olympic Peninsula, WA
    As a longtime patient, now relatively bed ridden, who has been put through the wringer multiple times by docs who don't recognize and charlatan psyches profiting on their misinformed and misguided ego driven diagnoses, I fully support this petition.
     
  10. Mary

    Mary Forum Support Assistant

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  11. Countrygirl

    Countrygirl Senior Member

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    UK
  12. 1gooddog

    1gooddog Senior Member

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    Oversolitiousness and reinforcement of unhelpful illness beliefs. Who in this universe has that quack hack been speaking to?! Believe me, and I assure you there were few if any that received this. I was on my own, managing symptoms, told it was in my head and depression and anxiety the cause, not the result of. Dear God in heaven, who doesn' get depressed from an illness that has turned their life upside down only to be told it in our head. I had a strong desire to hurt someone in the quack field after repeatedly hearing this. And I hated the drugs from those fake docs that put me into brain fog which was certainly not what I needed. Funny thing is I used terminology and symptoms that were unknowingly the same as you all use.
     
  13. NelliePledge

    NelliePledge plodder

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    Hi @JenB i see you’ve been tweeting a lot about GET and CBT. This petition is aimed at NICE asking them to do something about the current recommendations before the new guidance is written. It is very important that at a minimum there is a warning that harms have been reported as recently diagnosed people continue to be put through these approaches. Please can you help raise awareness of the petition. I know a few folks have contacted you about this by twitter and Facebook and through MEAction. I realise you’re busy but this petition,which has been started by a U.K. Doctor with ME who wrote a book about her experience, doesn’t have an organisation to promote it it is grassroots advocacy yet has still achieved over 4000 signatures. It has been retweeted by a few organisations but it would be really helpful if you could highlight it too.
     
  14. Learner1

    Learner1 Forum Support Assistant

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    I just received this from NICE regarding how/when to make comments:

     
    NelliePledge likes this.

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