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

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Michiel Tack said:
I don't want to sound too optimistic. There are also quite al to of things in the document that I disagree with. Hope to be able to write another blog post about these points of criticism.
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Would you agree that there is still a significant bias towards exercise and CBT?

The old assumptions that these have a special significance for ME/CFS are still visible in my view.

In terms of evidence there's actually no reason to mention them, other than in relation to the lack of evidence and recommending against them.
 
strategist said:
Would you agree that there is still a significant bias towards exercise and CBT? In terms of evidence there's no reason to mention them, other than in relation to the lack of evidence and recommending against them.
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Not really, I think the draft is pretty clear on this and that a discussion on this was needed given that the previous guideline recommended GET and CBT.

I also think it is good to have a section on physical maintenance and the other type of CBT so that patients do not think that exercise or CBT or necessarily bad or inappropriate if you have ME/CFS.

I felt a bit uncomfortable about the strength of recommendations regarding pacing. I would prefer if the draft (like the previous guideline from 2007) just states that in surveys many patients found this approach helpful but that there is currently no scientific evidence that is more effective in managing ME/CFS or preventing long-term deterioration.

There's a danger that patients will now think that pacing works and if they had paced back in the days, they would never have gotten this ill. Although a sensible thought, we don't really know if this is the case.
 
I just want to say a massive Thank You to the members of this forum who are co-ordinating and putting together the S4ME response to the consultation. A huge task, especially when many (or maybe all) of them are unwell themselves.
 
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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 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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I assume this is just a concession to the status quo. The whole thing is being nearly dismantled so leaving this is just a necessary concession to avoid getting stuck.

But using the current MS guidance to it is probably the better compromise. Very similar premise and relies on standard practices. As much as the psychosocial paradigm is useless here, the ideology is not going away and lip service is demanded. It's there simply because people want it to be there, not because it's of any use whatsoever.
 
rvallee said:
I assume this is just a concession to the status quo. The whole thing is being nearly dismantled so leaving this is just a necessary concession to avoid getting stuck.

But using the current MS guidance to it is probably the better compromise. Very similar premise and relies on standard practices. As much as the psychosocial paradigm is useless here, the ideology is not going away and lip service is demanded. It's there simply because people want it to be there, not because it's of any use whatsoever.
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Yes, but I am aware of the point @Jonathan Edwards makes in his testimony, that any flavour of CBT left in the guideline could be prone to conflation and confusion.

ETA: I also think it could be the thin end of a wedge.
 
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lunarainbows said:
I don’t know where to put this but:

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).

Why can’t we see a doctor - one main doctor who will oversee our care and be an ME/CFS specialist, who can advocate for us and help us talking about our exertion and come up with a plan. And see a specialist nurse in between, the way they do at the Lupus Clinic, to discuss our care plans. We just need specialists nurses, doctors to do home visits & discuss our illness and exertion and refer us on for other help if needed, then OTs & physios to help us at home and if we need any extra specific help that they can provide. Why can’t we have that. that is what I need. :(
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This is to me the most important unfinished business. I am not pushing it simply because my position is already made very clear in my witness statement. CBT should not be mentioned. CBT is unethical. Me saying that again is redundant.

but...
 
lunarainbows said:
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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Just to clarify that CBT is not part of the management plan as defined in recommendation 1.5.2 (page 12), nor is physical activity, but physical maintenance is.
 
Gecko said:
Just to clarify that CBT is not part of the management plan as defined in recommendation 1.5.2 (page 12), nor is physical activity, but physical maintenance is.
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Actually CBT is, because symptom management on page 12 which you refer to, then links to many other things, one of which is a section which has its own title: Psychological support: CBT 1.11.43 -1.11.50.

Although only physical maintenance is talked about on page 12, there is later on a section titled physical activity, 1.11.15 - 1.1.21 about when physical activity can be introduced.

Edited to add all section numbers.
 
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Seeing a number of physios on Twitter expressing confusion and upset at their main mode of treatment for other conditions being rejected for ME by both NICE and patients - one in particular calling for reasonable voices to work together to, presumably, solve this conundrum. It just emphasises, at least to me, how deeply ingrained the cultural assumption is that exercise/activity can do no harm.
 
lunarainbows said:
Actually CBT is, because symptom management on page 12 which you refer to, then links to many other things, one of which is a section which has its own title: Psychological support: CBT 1.11.43 -1.11.50.

Although only physical maintenance is talked about on page 12, there is later on a section titled physical activity, 1.11.15 - 1.1.21 about when physical activity can be introduced.

Edited to add all section numbers.
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My reading is that CBT is still an entirely optional adjunct (e.g. non essential) therapy.

However I take your point that what Symptom Management on page 12 links to is odd. It excludes orthostatic intolerance, but includes psychological support. Despite the former being noted as a symptom of ME and psychological distress not.

I would therefore propose a change from:
  • symptom management (see recommendations 1.11.27 to 1.11.50 on managing symptoms)
To:
  • symptom management (see recommendations 1.11.24 to 1.11.42 on managing symptoms)
In order to make it abundtly clear.

I'll add this suggestion to the correct thread @lunarainbows.
 
Andy said:
Seeing a number of physios on Twitter expressing confusion and upset at their main mode of treatment for other conditions being rejected for ME by both NICE and patients - one in particular calling for reasonable voices to work together to, presumably, solve this conundrum. It just emphasises, at least to me, how deeply ingrained the cultural assumption is that exercise/activity can do no harm.
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Did you give them a link to Physios for ME?

I can see there will be a lot of genuinely decent physios, OTs and therapists who will be at least disconcerted and some very anxious that what they have been telling patients and thinking was helping them was wrong. There needs to be a lot of retraining done.

I hope the individuals will have the sense to turn to the MEA and Physios for ME for advice, not to the perpetrators of the BPS model.
 
Trish said:
Did you give them a link to Physios for ME?

I can see there will be a lot of genuinely decent physios, OTs and therapists who will be at least disconcerted and some very anxious that what they have been telling patients and thinking was helping them was wrong. There needs to be a lot of retraining done.

I hope the individuals will have the sense to turn to the MEA and Physios for ME for advice, not to the perpetrators of the BPS model.
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The main example I'm thinking of Physios for ME are already engaging with fortunately. :)
 
Trish said:
Did you give them a link to Physios for ME?

I can see there will be a lot of genuinely decent physios, OTs and therapists who will be at least disconcerted and some very anxious that what they have been telling patients and thinking was helping them was wrong. There needs to be a lot of retraining done.

I hope the individuals will have the sense to turn to the MEA and Physios for ME for advice, not to the perpetrators of the BPS model.
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there will be a lot of decent GPs, OTs and physios now at a complete loss. NICE has always been the default and this is not a small change. I don't know if there will be any "penny drop" moments, but many professionals may need some positive support as well as education - I just hope for GPs it is not the usual suspects providing this.
 
Gecko said:
My reading is that CBT is still an entirely optional adjunct (e.g. non essential) therapy.

However I take your point that what Symptom Management on page 12 links to is odd. It excludes orthostatic intolerance, but includes psychological support. Despite the former being noted as a symptom of ME and psychological distress not.

I would therefore propose a change from:
  • symptom management (see recommendations 1.11.27 to 1.11.50 on managing symptoms)
To:
  • symptom management (see recommendations 1.11.24 to 1.11.42 on managing symptoms)
In order to make it abundtly clear.

I'll add this suggestion to the correct thread @lunarainbows.
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Yes. I think this is a very good idea.
 
lunarainbows said:
Yes. I think this is a very good idea.
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Another idea:

That psychological therapies: CBT is not linked to in page 12 (Gecko has already mentioned this), but also moved out of “Managing ME” 1.11 in the guidelines itself, because as you say, this is not about managing symptoms and the fact it’s there with orthostatic intolerance (which appears later on in 1.11), and things like nausea doesn’t make sense. I think this should be made completely clear to anyone reading it, especially to GPs and new patients.

I think it should be in a separate section by itself, after managing ME, perhaps titled with “Additional Help” or “Additional” or something similar. This makes very clear it’s not in the symptom management plan.

I will add something in the other threads about this.

Edit: sorry 1.11 is “managing ME”, not symptom management - I still think it needs a separate section outside of this.
 
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