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

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Adrian said:
I think the notion is it is used for psychological support to help patients cope with the issues of chronic illness - however, including CBT and not a general psycological support seems strange to me as it is choosing one method (and a cheap one!).

But if it is really about copeing with chronic illness maybe there should be general guidelines to reference suitable for any chronic illness.
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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.
 
Adrian said:
But if it is really about copeing with chronic illness maybe there should be general guidelines to reference suitable for any chronic illness.
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The BPS people were on the ball.

Depression in adults with a chronic physical health problem: recognition and management
NICE Clinical guideline [CG91] Published: 28 October 2009

Low-intensity psychosocial interventions
For patients with persistent subthreshold depressive symptoms or mild to moderate depression and a chronic physical health problem, and for patients with subthreshold depressive symptoms that complicate the care of the chronic physical health problem, consider offering one or more of the following interventions, guided by the patient's preference:
  • a structured group physical activity programme
  • a group-based peer support (self-help) programme
  • individual guided self-help based on the principles of cognitive behavioural therapy (CBT)
  • computerised cognitive behavioural therapy (CCBT).
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Peter Trewhitt said:
Thank you for clarifying that.

So @MSEsperanza was correct in suggesting that the ‘pull out’ quote on the NICE page is where the change happened. On the 12.22 snapshot ‘publication next week’ was clearly stated, though there was a discrepancy between the pulled out quote and the final sentence in the main text that was very similar but only referred to ‘publication after the meeting next week’.

Then by 13.33 the pull out quote was changed to match the final sentence in the main text, suggesting, as @MSEsperanza wondered, that perhaps when the page was created an earlier draft had been used as the source for the pull out. So that either NICE had never intended to commit to publication this coming week, or that they changed their minds on Tuesday or on Wednesday morning last week.
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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 :(
 
Trish said:
In our feedback on the draft guideline last November we made it clear that the is no evidence to support the inclusion of CBT for any purpose, nor for the inclusion of physical activity programs for those who want them. We suggested strongly that those sections should be deleted. Unsurprisingly that wasn't agreed.

The guideline is a big step forward, but given the composition of the guideline committee and the need for consensus in order to get all the committee to sign off on it and for it to be published, there were always going to have to be compromises.

My guess is that, in order to win on removal of GET and CBT based on false illness beliefs, and deconditioning, those on the committee had to allow the inclusion of roles for CBT therapists and physios/OT's. Hence the inclusion of the completely unnecessary and unevidenced CBT and activity programs sections. But at least it's made clear that these have to include the patient staying within their energy limits/envelope.
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A very clear statement on patients having the absolute right to decline such programs, without that prejudicing their status in the health & welfare systems, is essential.
 
Jonathan Edwards said:
Once you allow CBT it is extremely difficult to argue precise rules of what sort is allowed because there is no evidence on any sort here. That said, I think the guideline makes it clear, if you read it intelligently, that the sort of recovery-aimed CBT linked to increased exercise is not recommended.
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I can feel a few 'we prefer our definition' moments coming along.

When Professor Chalder and her team first piloted Cognitive Behaviour Therapy (CBT) for CFS in 1991, there were no established treatments for people who had been given the diagnosis.

CBT for CFS is based on the premise that the way people cope with the symptoms may contribute to their illness. ‘People often believe that if they don’t rest, their symptoms will get worse’, says Professor Chalder, ‘yet extended periods of rest can make people feel more tired and unwell by weakening muscles and disturbing the body clock.’

‘We think that what starts the fatigue is not the same thing that perpetuates the symptoms,’ she says. ‘People might initially develop the fatigue as the result of an illness, such as a virus, or after a period of stress. But once triggered, the fatigue is maintained by other factors, including some coping styles.

‘Beliefs and attitudes towards illness are important in many physical and mental conditions. In CFS, fear that exercise or activity may make symptoms worse can hinder recovery and inadvertently perpetuate the symptoms.’

CBT for CFS encourages people to gradually build up and resume regular daily activities, to identify and plan how to deal with any triggers that might cause symptoms to get worse – to learn how to manage and reduce the symptoms.

‘It also helps address any beliefs that may make recovery more difficult. CBT helps patients understand their symptoms, tackle the understandable fears they have about activity and encourages people to do more despite their tiredness.’
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https://www.kcl.ac.uk/ioppn/about/difference/22-cbt-for-chronic-fatigue-syndrome
 
That was Chalder 30 years ago, and she hasn't learned anything. It must be quite something to be able to hold on to such fantasies for so long in the face of mounting evidence that she's wrong. I wonder whether the BPS group will even face up to the harm their fixed beliefs have done to many thousands of sick people. There's something very wrong with science/medicine that allows perpetuation of myths like this.
 
CBT for CFS encourages people to gradually build up and resume regular daily activities, to identify and plan how to deal with any triggers that might cause symptoms to get worse – to learn how to manage and reduce the symptoms.

The record's stuck...
The record's stuck...
The record's stuck...
The record's stuck...
The record's stuck...
The record's stuck...
 
Sean said:
CBT for CFS encourages people to gradually build up and resume regular daily activities, to identify and plan how to deal with any triggers that might cause symptoms to get worse – to learn how to manage and reduce the symptoms.

The record's stuck...
The record's stuck...
The record's stuck...
The record's stuck...
The record's stuck...
The record's stuck...
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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?
 
Mithriel said:
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?
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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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Trish said:
The Science Bit by Brian Hughes:

New Treatment Guideline, Same Old Denialism

https://thesciencebit.net/2021/10/24/new-treatment-guideline-same-old-denialism/
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More Entrenched Obstruction by UK Psychiatrists
This is a guest post by my friend and coauthor Brian Hughes, of the psychology department at the National University of Ireland, Galway. Brian completely demolishes the claims by a band of recalcitrant psychiatrists that their preferred ME/CFS therapies are "evidence based." This essay, cross posted from The Science Bit, is a textbook example of how to expose bad science and bad medicine.
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https://www.thefacultylounge.org/
 
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.
 
Ariel said:
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?
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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.
 
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?)
 
strategist said:
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.
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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?
 
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