NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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Robert 1973 said:
My reason for sharing this anecdote is really just to reiterate what Jo is saying – if we accept that there are currently no effective treatments, they we need need to rely on basic human qualities of kindness, compassion and practical needs rather than bull***t therapies.
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I agree wholeheartedly with this. It's as though some therapists are so busy following the rule book they have forgotten how to listen, empathise and think about the patient's emotional and practical needs. The CBT I had was diabolically awful. The therapist had no idea about who I was, what I was experiencing and what my needs were. It was so superficial it left me in a worse state at the end of the series of sessions.
 
lunarainbows said:
Why can’t we just not have CBT anymore? Why is CBT and psychological therapy still playing such a huge role in our care (or even the main role, with a little bit of input with OT physio).
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Yes, given there is no case for CBT-a-la-GET, as targeted towards ME/CFS, there is presumably no point making a specific mention of it at all. Is it mentioned specifically for other disabling illnesses? (I genuinely don't know the answer to that). In truth any supportive CBT for ME/CFS would need to be specialised, but very different from what has gone before. It would have to be of a form that in no way sought to get people exercising as a way of improving their general health and wellbeing, unlike many other conditions. It will take therapists a long time to get their heads round this.
 
Barry said:
Yes, given there is no case for CBT-a-la-GET, as targeted towards ME/CFS, there is presumably no point making a specific mention of it at all. Is it mentioned specifically for other disabling illnesses? (I genuinely don't know the answer to that). In truth any supportive CBT for ME/CFS would need to be specialised, but very different from what has gone before. It would have to be of a form that in no way sought to get people exercising as a way of improving their general health and wellbeing, unlike many other conditions. It will take therapists a long time to get their heads round this.
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Just had a quick look at the MS guidelines.
From my skim read, the only mention of CBT is this (under fatigue):

“Consider mindfulness-based training, cognitive behavioural therapy or fatigue
management for treating MS-related fatigue.”

So, we seem to be a “special case” where CBT is concerned, with a whole section dedicated to it, and that being part of our management plan :/

edit: part of, not the whole management plan
 
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Robert 1973 said:
And finally, finally. Sincere thanks for all the work you have done on this, Jo. Unlike most of us, you have no personal reasons for being involved in all this, and I am not at all confident we would have got this far without your input.
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I'll second that. For critics who've been accused of conflicts of interest for having or caring for ME, it's a pleasure to read a sustained independent assault on the poor logic and faulty trial conduct that GET/CBT has offered. It will definitely have helped sway this guideline, and I hope it has a broader impact on evaluating BPS interventions in general.
 
Ravn said:
Just had a look at the list of stakeholders. Quite entertaining. I suspect the British Association of Sports Rehabilitators & Trainers and the Faculty of Homeopathy won't be too happy about the draft.
Mysteriously the Ministry of Defence is also on the list. We really must be scaring the establishment :emoji_scream:

More seriously though, I wonder which of those stakeholders will be making submissions, and what sort of arguments are they likely to make?

https://www.nice.org.uk/guidance/gid-ng10091/documents/stakeholder-list-2
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I suspect MOD are interested re GWI - it is still a big issue here
 
Robert 1973 said:
And finally, finally. Sincere thanks for all the work you have done on this, Jo. Unlike most of us, you have no personal reasons for being involved in all this, and I am not at all confident we would have got this far without your input.
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Mike Dean said:
I'll second that.
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Yes, very much doubt the draft guideline would be what it is so far without this testimony. Possibly nothing like.

As @Jonathan Edwards says, it is written to help people understand even if not familiar with trials methodology; couldn't help wondering if there is a subtext in that, in trying to educate those who should know trials methodology but maybe don't, especially those making key decisions in the review.

I know this sort of work is bread and butter to Jonathan, but I'm sure there is a great deal of work and dedication gone into it, to hit the right spot the way it does. Very grateful.
 
John Mac said:
NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance


Link requires a login but I was able to access it with a google search of "chronic fatigue syndrome" and within last 24 hours.

https://www.bmj.com/content/371/bmj.m4356.full.print
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The BMJ site has been good for posting responses. They don’t have to be tight letters that would be suitable for the print journal. Best to avoid ad hominems and ideally have a references section: but having just one or two references could be sufficient and an easy one is the BMJ piece itself.
 
Clearly this is a draft not the final thing. So how much risk might there be of the good things in this draft being diluted or even reverted? Because there must be potent forces bubbling under to try and achieve just that. Not a time for complacency or counting chickens I worry.
 
Barry said:
Clearly this is a draft not the final thing. So how much risk might there be of the good things in this draft being diluted or even reverted? Because there must be potent forces bubbling under to try and achieve just that. Not a time for complacency or counting chickens I worry.
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My concerns in a nutshell. I do hope people are not being too triumphalistic on social media... it aint published yet.
 
lunarainbows said:
Yes there’s a section about psychological therapy / CBT 1.11.43 - 1.11.50. Therapists help develop the self management plan. We see physios/OTs when we want to introduce activity (edit although it also says refer those with severe/very severe ME to OTs/physios for management plans).
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Hmm, that will need addressing in any response I think. OK, so it is accepted there is no curative value in CBT for ME/CFS. So the question has to be asked what is the evidence of value-added benefit (and evidence of lack of harm) for "general purpose" CBT aimed at ME/CFS, over and above that for any other illness. If no evidence of anything special to be gained, why treat ME/CFS as a special case for it. Especially as it would probably require a special form of CBT that takes much more care to not utilise exercise in the way it might for most other illnesses; a form of CBT that does not yet exist, cannot therefore have been trialled, and is therefore no evidence for.

I think the point has to be addressed that normal application of bog standard supported CBT may not be safe for ME/CFS, and that until it has been, and been trialled, no recommendations can be safely made.
 
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Barry said:
Hmm, that will need addressing in any response I think. OK, so it is accepted there is no curative value in CBT for ME/CFS. So the question has to be asked what is the evidence of value-added benefit (and evidence of lack of harm) for "general purpose" CBT aimed at ME/CFS, over and above that for any other illness. If no evidence of anything special to be gained, why treat ME/CFS as a special case for it. Especially as it would probably require a special form of CBT that takes much more care to not utilise exercise in the way it might for most other illnesses; a form of CBT that does not yet exist, cannot therefor have been trialled, and is therefore no evidence for.

I think the point has to be addressed that normal application of bog standard supported CBT may not be safe for ME/CFS, and that until it has been, and been trialled, no recommendations can be safely made.
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Yes, could you copy this over to the 1.11 Management of ME thread, when you have time? I think it’s really important.
 
Barry said:
Clearly this is a draft not the final thing. So how much risk might there be of the good things in this draft being diluted or even reverted? Because there must be potent forces bubbling under to try and achieve just that. Not a time for complacency or counting chickens I worry.
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Yes really important that the response emphasises things which SHOULDN'T be changed.
 
Article with quotes from BACME's Pete Gladwell:

Pete Gladwell, a clinical specialist physiotherapist and team leader of the Bristol CFS/ME service at North Bristol NHS Trust, welcomed the proposed change in advice.

“Since the last guideline was published in 2007, a significant body of research has been published which highlight the dysregulation of biological systems in ME/CFS. These changes cannot be explained by deconditioning, so our NHS service has for some time been moving away from a GET approach, which suggests that reversing deconditioning can lead to recovery,” he said.

“The controversy over GET has not been helpful for newly diagnosed patients, who have often been left feeling confused about how to approach physical activity,” he added.

Gladwell said that the “clear message” in the draft guideline was to approach physical activity from “a pacing perspective” by finding a sustainable level that the individual is confident of managing.
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https://www.pharmaceutical-journal....e-syndrome-in-draft-guidance/20208536.article
 
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