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NICE guideline on ME/CFS: Stakeholder consultation submissions (July 2017)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Jul 24, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    NICE guideline on ME/CFS: Stakeholder consultation submissions (July 2017)

    A number of organisations, including the MEA, will be publishing their submissions to the NICE guideline stakeholder consultation process

    This consultation process is asking for stakeholder opinion on the conclusion from the expert group that was appointed by NICE to review all new and relevant research evidence that there is no need to update or review the 2007 NICE guideline on ME/CFS

    It would seem sensible to gather all these submissions together on one thread

    CS

    Current list - updated 26th July

    Action for ME
    https://www.actionforme.org.uk/news/nice-guidelines-on-cfs/m.e.-must-be-reviewed/

    Forward ME Group of ME/CFS charities
    http://www.forward-me.org.uk/Reports/10 year surveillance (2017).pdf

    Hope 4 ME & Fibro NI
    http://hope4mefibro.org/wp-content/uploads/2017/07/Hope-4-ME-Fibro-NI-comments-form-2.pdf

    Invest in ME:
    http://www.investinme.org/IIMER-Newslet-17-07-04.shtml

    ME Action
    http://www.meaction.net/2017/07/23/nice-2017-response/

    ME Association submission
    http://www.meassociation.org.uk/201...-a-nice-guideline-ever-recorded-26-july-2017/

    ME letter (pdf) to Sir Andrew Dillon, Chief Executive at NICE, containing the 15,000 signature petition
    http://www.meassociation.org.uk/wp-...tion-Letter-to-Sir-Andrew-Dillon-24.07.17.pdf

    Tymes Trust
    http://www.tymestrust.org/pdfs/ttnice201707.pdf
     
    Last edited: Jul 26, 2017
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  2. charles shepherd

    charles shepherd Senior Member

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    The submission from the Forward ME Group of ME/CFS charities can be read here:

    http://www.forward-me.org.uk/Reports/10 year surveillance (2017).pdf

    The MEA will also be publishing our letter to Sir Andrew Dillon, Chief Executive at NICE, which will contain the MEA petition containing over 15,000 signatures from people who do want to see a review of the NICE guideline

    CS
     
  3. AndyPR

    AndyPR Cookies for Tired Sam

  4. charles shepherd

    charles shepherd Senior Member

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  5. Skippa

    Skippa Senior Member

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    Who are these people? They seem to be saying there is no need to remove GET/CBT from the guidelines?

    Grrr

    Did I read that wrong?
     
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  6. charles shepherd

    charles shepherd Senior Member

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    This is a submission to NICE from the Forward ME Group (FMG) - who meet under the Chairmanship of the Countess of Mar at the House of Lords

    All the UK charities that are members of FMG agreed to the content of this response - which is clearly concentrating on issues relating to medical ethics and the need for patients to be fully informed about the differences of opinion regarding the use of CBT and GET

    We all want to see the NICE guideline reviewed and I think I am right in saying that all the charities that belong to FMG want to see significant changes relating to the recommendations regarding CBT and GET

    The MEA position here is very clear - we want to see the recommendation re GET removed from the guideline

    CS
     
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  7. charles shepherd

    charles shepherd Senior Member

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    The MEA will be publishing their submission tomorrow
     
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  8. charles shepherd

    charles shepherd Senior Member

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  9. BurnA

    BurnA Senior Member

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    Charles is there a reason you don't mention CBT?
     
  10. Barry53

    Barry53 Senior Member

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    I do like this:-
     
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  11. Barry53

    Barry53 Senior Member

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    [My bold]

    I never realised that. Mind bogglingly naive and lackadaisical.
     
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  12. charles shepherd

    charles shepherd Senior Member

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    As we make clear in the MEA submission to NICE, and in the letter accompanying the MEA petition to Sir Andrew Dillon at NICE (both of which will be published tomorrow), we want to see CBT and GET removed from the NICE guideline as primary treatment interventions in ME/CFS

    However, as our extensive qualitative and quantitative patient evidence shows, some people with ME/CFS who have significsnt emotional or mental health problems, may find CBT helpful

    So we accept that CBT can sometimes be used as part of the overall management of ME/CFS when there are co-existent emotional or mental health problems

    CS
     
  13. Barry53

    Barry53 Senior Member

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    That makes good sense to me, providing it is clear to NICE that 'normal' CBT is acceptable in a symptom management capacity, and that PACE-style CBT as a cure-all is an absolute no-no.
     
    Last edited: Jul 24, 2017
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  14. mango

    mango Senior Member

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    I, too, accept that. At the same time, I can't help wondering what treatment guidelines for other diseases look like? Is CBT explicitly recommended in, for example, the MS, lupus or Parkinson's guidelines in the same way?

    Co-existent emotional or mental health problems are of course possible in all other conditions and diseases, obviously. Is CBT explicitly recommended in all the other guidelines as well?

    CBT has never ever done anything good for any of my symptoms. As a way to improve coping skills on the other hand, I can imagine it could potentially be useful for some people, sometimes, in certain circumstances. And yes, it would absolutely have to be "normal" supportive CBT, not the manipulative CFS/disease-denying/brainwashing kind.
     
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  15. Valentijn

    Valentijn The Diabolic Logic

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    The research supporting CBT for ME is entirely the illness-denial variety. Hence there's no evidence base for supportive CBT, and just a piss-poor evidence base for illness-denial CBT. NICE has no basis for including any CBT recommendations.
     
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  16. Skippa

    Skippa Senior Member

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    Damn that is, hmmm, very unfortunate because any support for CBT for a physiological disease PERPETUATES the myth that psycho solutions can cure or treat it.

    Damn... isn't that obvious?

    I would like Mea or whatever its called to change its stance to prevent us all being shipped off over and over and over from GPs offices to psychy offices and back again ping pong ping pong muh CBT the wonderful panacea

    Eta: @charles shepherd wording below has made me feel a little better about this :)
     
    Last edited: Jul 25, 2017
  17. charles shepherd

    charles shepherd Senior Member

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    Recommendations from the MEA 'patient evidence' report on CBT, GET and Pacing:

    RECOMMENDATIONS


    Our part 1 recommendations are based on the full results from our survey in respect of the three main therapeutic approaches to illness management, and are as follows:

    Cognitive Behavioural Therapy (CBT)

    We conclude that CBT in its current delivered form should not be recommended as a primary intervention for people with ME/CFS.

    CBT courses, based on the model that abnormal beliefs and behaviours are responsible for maintaining the illness, have no role to play in the management of ME/CFS and increase the risk of symptoms becoming worse.

    The belief of some CBT practitioners that ME/CFS is a psychological illness was the main factor which led to less symptoms improving, less courses being appropriate to needs, more symptoms becoming worse and more courses being seen as inappropriate.

    Our results indicate that graded exercise therapy should form no part of any activity management advice employed in the delivery of CBT, as this also led to a negative impact on outcomes.

    There is a clear need for better training among practitioners. The data indicates that deemed lack of knowledge and experience had a direct effect on outcomes and remained a key factor even where courses were held in specialist clinics or otherwise given by therapists with an ME/CFS specialism.

    However, our results did indicate that when used appropriately the practical coping component of CBT can have a positive effect in helping some patients come to terms with their diagnosis and adapt their lives to best accommodate it.

    CBT was also seen to have a positive effect in helping some patients deal with comorbid issues – anxiety, depression, stress – which may occur at any time for someone with a long-term disabling illness.

    An appropriate model of CBT – one that helps patients learn practical coping skills and/or manage co-morbid issues such as those listed above – could be employed, where appropriate, for ME/CFS as it is for other chronic physical illnesses such as multiple sclerosis, Parkinson’s disease, cancer, heart disease, and arthritis etc.; and we recommend all patients should have access to such courses as well as access to follow-up courses and/or consultations as and when required.

    Graded Exercise Therapy (GET)

    We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.

    One of the main factors that led to patients reporting that GET was inappropriate was the very nature of GET itself, especially when it was used on the basis that there is no underlying physical cause for their symptoms, and that patients are basically ill because of inactivity and deconditioning.

    A significant number of patients had been given advice on exercise and activity management that was judged harmful with symptoms having become worse or much worse and leading to relapse.

    And it is worth noting that, despite current NICE recommendations, a significant number of severe-to-very severe patients were recommended GET by practitioners and/or had taken part in GET courses.

    The other major factor contributing to poor outcomes was the incorrect belief held by some practitioners that ME/CFS is a psychological condition leading to erroneous advice that exercise could overcome the illness if only patients would ‘push through’ worsening symptoms.

    We recognise that it is impossible for all treatments for a disease to be free from side-effects but, if GET was a licensed medication, we believe the number of people reporting significant adverse effects would lead to a review of its use by regulatory authorities.

    As a physical exercise-based therapy, GET may be of benefit to a sub-group who come under the ME/CFS umbrella and are able to tolerate regular and progressive increases in some form of aerobic activity, irrespective of their symptoms. However, identifying a patient who could come within that sub-group is problematic and is not possible at present.

    Some patients indicated that they had been on a course which had a gentle approach of graded activity rather than a more robust and structured approach of graded physical exercise. There were some reports that patients were told they should not exercise when they felt too unwell to do so. These led, for some, to an improvement in symptoms or to symptoms remaining unaffected.

    However, we conclude that GET, as it is currently being delivered, cannot be regarded as a safe and effective form of treatment for the majority of people with ME/CFS. The fact that many people, including those who consider themselves severely affected, are being referred to specialist services for an intervention that makes them either worse or much worse is clearly unacceptable and in many cases dangerous.

    GET should therefore be withdrawn by NICE and from NHS specialist services as a ‘one size fits all’ recommended treatment with immediate effect for everyone who has a diagnosis of ME/CFS. This advice should remain until there are reliable methods for determining which people who come under the ME/CFS umbrella are likely to find that GET is a safe and effective form of management.

    Link to full report: http://www.meassociation.org.uk/2015/05/23959/

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  18. Barry53

    Barry53 Senior Member

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    I phrased it very badly, sorry. I meant helping to cope mentally with the distress caused by symptoms.
     
  19. Skippa

    Skippa Senior Member

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    Hi @charles shepherd might I suggest editing copy/pasting all the links into the first post?

    This will make them easy to find and allow all our (inevitable) commenting to "not get in the way" of the actual statements.
     
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  20. slysaint

    slysaint Senior Member

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    But then that should fall under treatment for mental health problems as it does for anyone with or without a co-existant physical illness and receive the correct form of CBT.

    As you say in your recommendations:
    The form of illness aversion therapy that is called CBT to which ME patients are subjected whether they have a diagnosed mental health problem or not should NOT be in the NICE guidelines.
     
    Last edited: Jul 25, 2017
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