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

MEMarge said:
Surely NICE could remind people that current Guidelines on CBT and GET are "optional", not mandatory, ie with the patient's (or family for youngsters) agreement and should ONLY be suggested for those at the milder end of the severity spectrum.
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That's the very first thing said in the CFS guidelines under Management:
1.1.1 Shared decision-making
1.1.1.1 Shared decision-making between the person with CFS/ME and healthcare professionals should take place during diagnosis and all phases of care. The healthcare professional should:

  • Acknowledge the reality and impact of the condition and the symptoms.

  • Provide information about the range of interventions and management strategies as detailed in this guideline (such as the benefits, risks and likely side effects).

  • Provide information on the possible causes, nature and course of CFS/ME.

  • Provide information on returning to work or education.

  • Take account of the person's age (particularly for children younger than 12 years), the severity of their CFS/ME, their preferences and experiences, and the outcome of previous treatment(s).

  • Offer information about local and national self-help groups and support groups for people with CFS/ME and their carers (see also the NHS Expert Patients Programme[3]).
1.1.1.2 When providing care for children and young people, healthcare professionals should follow best practice as described in the national service frameworks for children for England or for Wales[4].

1.1.1.3 Healthcare professionals should be aware that – like all people receiving care in the NHS – people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care.

1.1.1.4 Healthcare professionals should recognise that the person with CFS/ME is in charge of the aims and goals of the overall management plan. The pace of progression throughout the course of any intervention should be mutually agreed.

1.1.1.5 Healthcare professionals should provide diagnostic and therapeutic options to people with CFS/ME in ways that are suitable for the individual person. This may include providing domiciliary services (including specialist assessment) or using methods such as telephone or email.
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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.
 
"
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.
 
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.
 
Binkie4 said:
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.
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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
 
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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,
Dr Charles Shepherd and Sue Waddle asked whether, pending the completion of the Review, NICE might issue a statement about CBT and GET being questionable. The Chairman [the Countess of Mar] said she would write to Prof Mark Baker about this.
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https://www.s4me.info/threads/forwa...om-meeting-7th-february-2018.2736/#post-49295

The minutes also note that,
Tony Crouch read an extract from Professor Mark Baker’s reply to correspondence from Invest in ME Research. This reiterated his position that the existing guideline would not be withdrawn pending the issue of the new one but that he had been struck by the reports at the stakeholder workshop of misuse of the current guidance. He was considering any action that NICE might take. This reflected the discussion in the small group of which Tony was a member at the workshop where it was strongly suggested that if the guideline was not to be withdrawn a covering message should be placed on it in order to prevent further harm.
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(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.
 
Trish said:
No idea whether there was any connection. Gary has not said he is involved in any way with AfME.
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Binkie4 said:
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.
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Gary Burgess said:
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.
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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.
 
Sly Saint said:
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
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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!)
 
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