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

charles shepherd

Senior Member
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2,239
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
 
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Skippa

Anti-BS
Messages
841
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

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?
 

charles shepherd

Senior Member
Messages
2,239
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?


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
 

charles shepherd

Senior Member
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I do like this:-
Therefore, it would be worthwhile to note from the outset that accountability must remain then with these staff and functions. Should any patient be affected deleteriously by the guidance in NICE then these people in NICE must be made accountable.

Going forward then any harm coming to patients by these guidelines and from any decision not to update them must be seen to be caused by the NICE Board and SMT and accountability must be taken by those members.
 
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15. NICE state that " Peer-reviewed study reports were assessed by abstract."

For such an important document as this Surveillance proposal consultation it is not good enough to rely on reading abstracts only as they do not reveal methodological flaws and peer reviewing has been shown to be inadequate in the "gold standard" PACE trial for example.

This is a major failing that should invalidate the Surveillance proposal consultation document.
[My bold]

I never realised that. Mind bogglingly naive and lackadaisical.
 

charles shepherd

Senior Member
Messages
2,239
Charles is there a reason you don't mention CBT?

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
 
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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
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.
 
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mango

Senior Member
Messages
905
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
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?

'normal' is acceptable in a symptom management capacity, and that PACE-style CBT as a cure-all is an absolute no-no.
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.
 

Skippa

Anti-BS
Messages
841
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 :)
 
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charles shepherd

Senior Member
Messages
2,239
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


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
 
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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.
I phrased it very badly, sorry. I meant helping to cope mentally with the distress caused by symptoms.
 
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2,125
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

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:
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 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.
 
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