Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

Pulse have printed a follow up article on the publication of the new NICE guidelines

“NICE to publish ME/CFS guideline after final meeting next week”
https://www.pulsetoday.co.uk/news/c...CubLjfvvhnM2CPmcULSl9uCsxuxZcpSeyFqEOry8mkjiM

 

And I still have absolutely no idea when they will be published, only that it will be within the close to infinite period of time which is after a meeting next week

That cannot be accidental, after all a different phraseology could have been used, such as

The new guidelines will be published on Wednesday, after a final meeting.

 

This Pulse follow up article clearly indicates the rejection GET and ends with juxtaposing mention of PEM with Long Covid

It is useful getting this out to GPs.

Note, It seems sometimes I can access the article and then it is refusing access unless registered.

 

I thought this to, but it was pointed out to me that separately to the reference of ‘after the meeting’, NICE also say the guidelines will be published next week. So presumably this means some time between the end of the Tuesday? meeting and the end of the day on Friday 29th.

Still the wording of the announcement could be much clearer, I certainly struggled to understand it.

[Added later - I have been trying to find again the specific stand alone reference to publishing next week

however I have failed relocate it and wonder if the relevant sentence has since been edited to now read

bolding mine]

 

Thanks for the link and transcript @Simbindi and @Dx Revision Watch .

Spoiler: Short discussion of it

That read like a bad infomercial.

And a nasty one as well, with continuous barbs about how patient's health is basically dependant on their motivation, choice and management skills.

Chalder reads like a very abusive person. (Cruel too, with how amused she was at certain things.) It was also quite malicious how she said:

She left out the bit where “cognitive restructuring”, influencing the patient’s thoughts and beliefs, is an active ingredient of the process.

And also the part that "negotiation with the patient" is a core part of the CBT , every course starts with influencing the patient into cooperating with the programme: they purposefully instruct the therapist how to gain patient’s trust with deceitful manipulation so they can be gaslit into doing what the therapist wants them to do. They first need to talk along with the patient, acting like they take them seriously, so they can then later abuse them into continuing activity even when their symptoms worsen and call the notion that they are still ill when they get symptoms from activity a “distortion of reality”.

And next to that obvious omission, it was also another nasty allusion towards the continuous theme in the interview of improvement being a choice, by saying that people should decide of they “want that for themselves”.

 

That this can no longer be the content of CBT for ME, and with that the therapy falls apart.

If the final version keeps appendix G from the draft, then firstly, it shows that there is no scientific basis for CBT for ME as it has been applied in the last 30 years.

Secondly, it's in the content.
The behaviour part of CBT can, if you follow the draft, no longer be used to influence patients into the "desired behaviour" of acting like a healthy/healthier person by making them "discover/explore" that pushing through their symptoms will lead to less disability, as you are no longer allowed to offer "any therapy based on physical activity or exercise as a treatment or cure for ME/CFS". PESE is also part of the draft.
And the cognitive part is meant to make patients stick to the behaviour part and dismiss symptoms as meaningful. Doing crap like giving an "alternative explanation" for an obvious relapse from activity, or explaining to a patient that thinking you still have ME because you have symptoms from activity is a "distortion of reality" are no longer allowed too.

The CBT fans in the committee clearly seem to have gotten in some loopholes, and I have no doubt the core crew will try to bend them towards their aims as far as they can, but in general I think and hope this will at least psuh aside most of the most harmful practises, as essentially it thrashes the CBT structure and aims.


One issue that I think people should be extra alert of, is that an essential part of the CBT manuals for ME (at least the early ones and they don't seem to have changed to at least the PACE trial) is that therapists are explicitly instructed to build a faux bond of trust with patients, to make them initially feel heard and safe with the explicit goal that they will accept the therapy and are then accessible for later manipulation and gaslighting into what the therapist wants from them, which is to increase activity beyond boundaries and obvious symptom exarcebation.

Theoretically the therapy is "voluntary", but there is active manipulation and abusive coercion taking place. The guideline emphasises that the patient's limits and wants should be guiding, which in effect would be another nail in the CBT coffin, BUT I think that regarding CBT there should be extra attention to safeguarding that patients are getting honest information and are not manipulated into doing things they wouldn't want to do if they were better informed.

 

Normal CBT is not supposed to involve the therapist attempting to persuade the patient to believe that the symptoms are psychologically generated.

 

i realise I am stating the obvious, but initially creating a fake bond of trust in order to manipulate how someone thinks should surely be called out as unethical? Shouldn’t Listening, respecting, believing what the patient says as they report their symptoms and experience, be the fundamentally expected professional standard of any consultation or therapeutic session? The moment patients realise they have been duped and ‘groomed’ into changing their thinking, the trust is broken in a way that is unlikely to ever be repaired. (Last sentence added on edit) which leaves me wondering how NICE frame their underlying ethical basis?)

 

I hope that the publication of the final NICE ME/CFS guideline will serve to set a precedent for NICE in terms of them learning how to put a stop to unevidenced treatments that eminent clinicians have built virtual empires on. I also hope that this begins to erode the FND and MUS edifices that are currently being erected, because CBT treatment for these conditions is also based on convincing the patient that their symptoms have a psychosomatic causation, when there is no evidence that this is the case or that psychological treatments objectively improve symptoms.

I hope that MUS and FND are areas that @dave30th will be able to continue to focus on in the future, especially given that many PWME are still at risk of being diagnosed with these conditions. What is happening with regards to FND is particularly worrying, it is starting to become a mainstream approach in the neurology departments in the UK.

 

Yes. I felt this is still a major issue in the new guidelines. It's another reason I don't like the widening of what were originally specialist ME/CFS clinics to much more general 'Pain and Fatigue clinics' or 'ME/CFS clinics that accept any patient with chronic fatigue symptoms'. I really don't think that the therapists in these clinics are going to competently be able to change their approach between patients with idiopathic fatigue, burnout, stress etc., and the genuine ME/CFS patients with PEM (and all the other multitude of symptoms we have). Sleep hygiene does not work for ME sufferers and for many of us trying it actually worsens our condition.

 

Yes, I made it clear that I thought the continued use of CBT was unethical in my expert witness testimony to the NICE committee.

 

This was from the pull quote I think? At least I remember being reassured by the pull quote.

Unfortunately, the pull quote now has the same ambiguous wording as the main text:

"We are now confident that the guideline can be effectively implemented and we will discuss the input from the meeting at our Guidance Executive next week with a view to publication."
https://www.nice.org.uk/news/articl...ps-for-publication-of-its-guideline-on-me-cfs

So an editor either just misunderstood the main text due to its ambiguousness or pulled the quote from another text?

Given the optimistic text from ForwardME I wondered whether the stakeholders received just the text of the public announcement or some additional info, but it seems S4ME haven't?

 

The NICE announcement did previously include a clear statement that the guidelines would be published this week in addition to the ambiguous ‘after the meeting’ phrase, but I can’t find it any more, so I wonder if the final sentence @Trish quotes has been edited during the week:

[sorry cross posted]

 

In the earliest years there is no "normal" CBT and "special" ME-CBT, they follow the exact same principles. It's the basic assumptions/starting point that make the difference.

(Unless I'm translating wrong, CBT-for-ME also doesn't generally persuade the patient to believe that the symptoms are psychologically generated, but that they are a reversible result of a combination of psychology and behaviour; in fact, the manuals that I have seen emphasise at length how important it is NOT to give the patient the notion/knowledge that you think their symptoms are psychiatric in origin, even though they themselves work out of a psychiatric framework and on the theoretic principle that psychology is in the way of improvement-producing behaviour.

It's also not a template that some of the the core BPS crew use or want to advocate, as they want to be seen as a legit part of treating biomedical conditions.)

 

A great article, all of which is eminently quotable, but here is a bit I selected to highlight:

I do wish we had video clips of the relevant BPS ‘great and the good’ responding.

 

Exactly. Even though I knew it was bad, reading early material/guidelines/manuals I still found it shocking and infuriating* it pissed me off to no end to see that while there was nearly zero concern whatsoever of applying this therapy to people who were seriously ill (or even having a biomedical illness), apart from some rare lip service here and there, there has been so much discussion on how to manipulate patients who knew they were having a physical illness into accepting a psychiatric treatment they would have otherwise rejected.

The way they describe how to gain the patient's trust, how to give them the feeling they and their illness are being taken seriously, not as a matter of empathic principle, but to get them to agree with CBT and do what the psychiatrist wanted from them is just plain malicious and abusive.


*edited to change english mistake