1. Guest, the 'News in Brief' for the week beginning 1st March 2021 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

Discussion in 'Petitions' started by Sly Saint, Feb 23, 2018.

  1. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    1,856
    Likes Received:
    11,003
    Brilliant! Well done.
     
    Louie41, Hutan, Indigophoton and 3 others like this.
  2. Valentijn

    Valentijn Guest

    Messages:
    2,275
    Likes Received:
    13,316
    Location:
    Netherlands
    That's the very first thing said in the CFS guidelines under Management:
    But it gets ignored, just like the recommendation to use heart rate monitors with GET gets ignored. When NICE creates a guideline which makes a disease sound psychosomatic, they are sending very mixed messages with those warnings. Sure, patients have a right to choose, but not if they're incapable of making rational decisions, which is exactly what the rest of the guideline implies. Why take safety precautions with GET if symptoms are not reflective of an actual physical illness?

    This is why a compromise between "it's a real disease" and "here's some psychosomatic treatments for it" is such an abject failure. It doesn't make sense, so doctors focus on the treatments, and the disease is then seen as psychosomatic. CBT/GET need to go, full stop, and every other psychosomatic insinuation.
     
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,735
    Likes Received:
    47,274
    Location:
    UK
    "
    For the PACE trial, the cognitive-behavioural interventions were not intended as adjunctive therapies to assist patients to adjust to their health problems, or to address secondary complications or comorbid disorders, but were intended as primary treatments to treat the presumed perpetuating factors and ultimately to reverse the illness itself. Thus, for an illness that is widely considered to be a biomedical illness, with many catalogued immunological and neurological abnormalities [13-22], we are presented with a psychotherapy which is intended to reverse the illness itself.

    Despite the hyperbole and misrepresentation in the media reporting, the outcomes of the PACE trial do not support the fear-avoidance-deconditioning hypothesis in CFS/ME.

    CBT was designed to reverse the illness, by addressing a hypothetical maladaptive fear-avoidance response to symptoms. If the illness itself had been reversed and successfully treated, then one would expect to see improvements in objectively measured outcomes of disability. But there were no improvements in any of the objective measures (e.g. a six minute walking distance test and a step test) after treatment with CBT in the PACE trial. So it seems clear that CBT failed to reverse the illness, demonstrating that the fear-avoidance hypothesis was not supported by the outcomes of the PACE trial project.

    Furthermore, Chalder et al. acknowledge that CBT and GET failed to improve deconditioning (fitness assessed by a step test), and that the deconditioning hypothesis, upon which the PACE trial was based, was not supported by the outcomes: “Fitness measures did not mediate the effects of the treatments.” [23]

    Because of the potentially severe adverse reaction to exertion experienced by CFS/ME patients, cognitive-behavioural therapies, including exercise therapy, are not necessarily benign interventions."

    http://www.bmj.com/content/350/bmj.h227/rr-20

    This needs to be hammered home.

    If patients want talking therapy for anxiety, fine. If they want help in understanding about pacing ok,
    but CBT/GET as they stand are not treatments for ME and should therefore not be in the guidelines.
     
    Awol, ukxmrv, dangermouse and 13 others like this.
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,735
    Likes Received:
    47,274
    Location:
    UK
    2766 signatures

    @Gary Burgess please could you 'advertise' this if you haven't already. Ta Sly.
     
  5. Gary Burgess

    Gary Burgess Established Member (Voting Rights)

    Messages:
    52
    Likes Received:
    1,326
    Location:
    Jersey
    For sure. Thank you for flagging it up.
     
    Joh, Forestvon, NelliePledge and 14 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,735
    Likes Received:
    47,274
    Location:
    UK
    MEMarge, Jan, Binkie4 and 6 others like this.
  7. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    1,438
    Likes Received:
    10,523
    Numbers are a bit stagnant. Have just posted it to a local group.

    Can we do any more? Would hate Nice to think they can get away with leaving it till 2020, or even leaving it on an ongoing basis. That decision hasn't been made.

    How much publicity is this getting? My impression is that I see Dr Myhill's petition a lot but not this one.


    EDIT: thanks @Gary Burgess for agreeing to flag it up, and @Sly Saint for keeping us up to date with numbers.
     
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,735
    Likes Received:
    47,274
    Location:
    UK
    I don't think the choice of photo helps; plus I don't think it is that obvious (unless people read the blurb or go to the link) what it is about.........:(

    anyone contacted the #stopGET lot?

    2908

    eta: still nothing from AfME
     
    Last edited: Mar 3, 2018
    Joh, MEMarge, Binkie4 and 1 other person like this.
  9. Indigophoton

    Indigophoton Senior Member (Voting Rights)

    Messages:
    849
    Likes Received:
    9,774
    Location:
    UK
    Following the Forward ME meeting earlier this month, the Countess of Mar is going to write to Mark Baker, Director of the NICE Guidelines centre,
    https://www.s4me.info/threads/forwa...om-meeting-7th-february-2018.2736/#post-49295

    The minutes also note that,
    (My bold).

    The more we can keep the pressure up, the more likely Mark Baker and NICE will feel compelled to act. They can't say they don't know that GET is causing harm anymore.
     
  10. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    1,438
    Likes Received:
    10,523
    @Sly Saint

    Re: nothing from Action for ME

    I posted the GET petition on their fb page this afternoon. How long it remains- who knows?
     
  11. MarcNotMark

    MarcNotMark Senior Member (Voting Rights)

    Messages:
    324
    Likes Received:
    2,304
    Invisible Woman and TiredSam like this.
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,735
    Likes Received:
    47,274
    Location:
    UK
    ha; I had no idea they had joined. Thanks for the heads up.
     
  13. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    6,558
    Likes Received:
    43,608
    Joined along with @Gary Burgess then. OK, would be good if we can get something positive from this for PwME.
     
    MEMarge and NelliePledge like this.
  14. Trish

    Trish Moderator Staff Member

    Messages:
    30,799
    Likes Received:
    146,783
    Location:
    UK
    No idea whether there was any connection. Gary has not said he is involved in any way with AfME.
     
  15. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    1,438
    Likes Received:
    10,523
    Errrm........All I have done was post the GET petition on their fb page. What am I missing? What might they have joined? Along with @Gary Burgess? @Barry. Am very perplexed.
     
    MEMarge and Barry like this.
  16. Gary Burgess

    Gary Burgess Established Member (Voting Rights)

    Messages:
    52
    Likes Received:
    1,326
    Location:
    Jersey
    No connection whatsoever. The only charity I have a tenuous link with is the ME Association in so far as I signed up to get their magazine.
     
  17. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    6,558
    Likes Received:
    43,608
    Some crossed wires on my part I would think then, from this post:

    https://www.s4me.info/threads/gary-burgess-talking-me-cfs-bbc-radio-5-live-wed-1pm.2635/#post-48372

    And importantly, for me there was not going to be a problem if there was a connection, just an opportunity for more debate.
     
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,735
    Likes Received:
    47,274
    Location:
    UK
    Last edited: Mar 5, 2018
    MEMarge, Binkie4 and Jan like this.
  19. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    1,438
    Likes Received:
    10,523
    Just checked AfME fb page and post I placed on Sat with link to vote is prominently displayed........

    Would be great if it had some likes. Currently none.
     
  20. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

    Messages:
    262
    Likes Received:
    2,600
    The photo is from the person who posted the poll's book :thumbsdown:.

    Not the greatest idea, in my opinion (photo / book association, not the poll itself!)
     
    MEMarge and Sly Saint like this.

Share This Page