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

"STOP THE REVIEW" probably.

 

Yup. Recommends regular reviews and advises the standard use of making nurses available for any concerns in-between. You know, like with other diseases. Which is nice.

 

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.

 

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

 

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.

 

I suspect MOD are interested re GWI - it is still a big issue here

 

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.

 

Is this in the new draft? Only done the barest skim so far.

 

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.

 

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).

 

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.

 

My concerns in a nutshell. I do hope people are not being too triumphalistic on social media... it aint published yet.

 

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.

 

Yes, could you copy this over to the 1.11 Management of ME thread, when you have time? I think it’s really important.

 

Done

 

Yes really important that the response emphasises things which SHOULDN'T be changed.

 

@Jonathan Edwards , would you have any objections to your testimony being replicated in full on the forum in its own thread? I think it would be useful to have it in an easier to read and more accessible format.

 

Article with quotes from BACME's Pete Gladwell:

https://www.pharmaceutical-journal....e-syndrome-in-draft-guidance/20208536.article

 

I'm glad that he accepts the new guideline and the message.