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

There is scope here in relation to supporting people with chronic illness to tailor that support to the specific issues the individual is experiencing, especially as we have no clear evidence supporting any one particular approach.

I had big issues changing my behaviour to do less, to incorporate pacing into my daily life, which meshes well with CBT, however someone else may struggle emotionally to accept being severely restricted which might be better suited to good old fashioned Rogerian counselling, another person may have worries about the future and need an informed listener to ensure they understand what we do and don’t know about the course of ME, and so on.

If we have no evidence to decide what is appropriate to any person, or indeed any evidence that any psychological intervention at all is helpful, it does seem inappropriate to specify only CBT, though here in the UK currently that is all that is likely to be on offer within the NHS.

 

This is precisely why it's important that we record full quotes in these threads, rather than just post a link. It's all too easy for something to be changed online

 

I can feel a few 'we prefer our definition' moments coming along.

https://www.kcl.ac.uk/ioppn/about/difference/22-cbt-for-chronic-fatigue-syndrome

 

When are the Rountable minutes being released? After the Exec meeting?

 

Up where, one has to wonder.

 

It may seem picky to be worrying about whether the guideline is coming out this week or the next but in this thread

https://www.s4me.info/threads/evide...sharpe-chalder-white.22905/page-5#post-384766

there is discussion of a letter that White, Miller and Chalder had published yesterday in the Mail on Sunday where they claim that GET and CBT have good trials supporting their use as evidence based treatments.

If the guidelines had come out on Saturday we could have pointed out that this was a lie, but the current NICE guidelines support it.

Who knows what they will get into the public consciousness over the next week or so?

 

Also once the new guidelines are published we can respond to such with the statement that they are acting against the conclusions of their own professional bodies, ie the medical Royal Colleges, whose representatives have agreed to support the new guidelines and that these interventions are unsafe and inappropriate at the NICE round table event.

 

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I have not been able to write a post about this, but there is generally not enough recognition that CBT for ME/CFS as practiced is actually psychological abuse. It is the opposite of learning to cope with your illness (which really needs to involve accepting being ill) which is presumably what is meant by "supportive" CBT. If this is not recognized and the differences between the approaches clearly delineated, patients will suffer. I was disappointed with the fuzziness and what I perceive to be quite a lax attitude on these points.

Is it really the case that proponents of what is actually psychological abuse can hide behind the idea that CBT is a monolith and there is no evidence to distinguish one type of practice from another? You can just do anything and call it "CBT". Where is the protection for patients?

Sorry if this has been covered.

 

I very much agree with this sentiment. I think there is a major problem and indicate that in my testimony. I think the answer is yes, proponents of CBT can hide behind not so much a monolith as a putty ball that can be squashed into whatever shape desired.

The answer is always that CBT is tailored to the individual. How that is possible when we don't even know it works makes no sense but it is something accepted very widely, including by many people PWME might see as sympathetic.

At the round table the main concern of those worried about removing 'curative CBT' was that a too negative view of CBT was being given, reducing hope That was countered by a committee representative and others indicating that patients do not want false hope. The discussion did not progress further.


It is perhaps of interest that now that the round table is over, continuing resistance to the guidelines is now coming from the psychiatry PACE authors rather than the rehabilitationists who dominated the RT discussion.

 

The rehabilitationists and royal colleges were just pawns sent by the PACE group, weren't they? They came across as not really having domain knowledge.

 

Presumably the Guidance Executive at NICE are meeting today, as they seem to usually meet on Tuesdays, so presumably we will hear tomorrow their timescale for publishing the new guidelines if they follow a pattern of a next day online announcement.

We don’t know if the proposed ‘clarification’ will be in the form of amendments to the guidelines itself or in supplementary material. If the former, who would need to agree this, would the guidelines committee need to be involved?

I am also assuming publishing will involve advanced embargoed access to the new guidelines and associated material for steak holders and with a press release for the media, a minimum of several days in advance of formal publication.

(Note. Pulse in one of their articles referred to the new guidelines already being available via a freedom of information request. I have not seen this reported elsewhere, nor heard that NICE had resumed answering any of the currently overdue FOI requests. Would their be any benefit to NICE to continue delaying their answers till after publication, other than spreading the workload?)

 

And will the relevant Royal Colleges now feel they have been used and abused by the PACE advocates, set up to look foolish?

Who will the SMC now go to for ‘expert opinion’ on publication of the new guidelines?

What will follow the article to appear in the Journal of Internal Medicine (see abstract at https://kclpure.kcl.ac.uk/portal/en...is(536398c9-3ebe-4faf-b3bc-e01257e82c65).html and David Tuller’s comments https://www.virology.ws/2021/10/23/...rrVJwoNE7pGAt0ofVDPx1_Wll6GWe-goU0rXBRlVJK5NU ) and the letter published in the Mail newspaper? Have similar letters been sent to other newspapers or was the one to the Mail just testing the water?