UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

MSEsperanza said:
From another thread:



The Journal of Neurology Neurosurgery and Psychiatry is published by the BMJ group and Alan Carson is one of the Journal's Associate Editors.
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Only eight?!! Is it ethical to have one of the journal editors as an author? Can't wait to see how quickly Paul Garner and Live Landmark stamp their approval of it after it's published
 
Caroline Struthers said:
Only eight?!! Is it ethical to have one of the journal editors as an author? Can't wait to see how quickly Paul Garner and Live Landmark stamp their approval of it after it's published
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I've been looking at submitting a paper to a journal where the co-author is one of two editors. We have aranged with the editor to have a different process to submit.
 
The next meeting of the All Party Parliamentary Group for ME will include
Andy said:
a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts.
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More detail here, UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward
 
Apologies for cross-posting from another thread:

This year's Conference of the European Association of Psychosomatic Medicine (EAPM) in June 2023 in Wrocław (Poland) will dedicate a 'symposium' to the new Guideline:

https://www.eapm-conference.org/index.php/program/main-program

FRIDAY 16 | 10:15-11:30 | KAMIENICA ROOM

SYMPOSIUM
CFS/ME: CONTROVERSY AND COMMUNICATION FOLLOWING THE 2022 UK NICE GUIDELINES

CHAIR
Per Fink.
Research Clinic for Functional disorders and Psychosomatics, Aarhus University Hospital. Denmark
  • What is CFS, the evidence for treatment and the controversy?
    Michael Sharpe    .     University of Oxford. President of the European Association of Psychosomatic Medicine (EAPM). United Kingdom.
  • Facts and myths of CFS/ME, how do we navigate, in research and in the clinic?
    Per Fink    .
    Research Clinic for Functional disorders and Psychosomatics, Aarhus University Hospital. Denmark
  • Wake me when it´s over. A personal story about a rapid recovery from CFS/ME.
    Live Landmark    .
    Department of Psychology, Faculty of Social and Educational Sciences, Norwegian University of Science and Technology. Norway
  • Debate and misinformation in the press and on social media - can we do anything about it?
    Lene Toscano    .
    Center for Functional Disorders, Region of Southern Denmark. Denmark
 
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InitialConditions said:
You could close Garner's Twitter account!
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Indeed, I am imagine as usual for these things from this area it will all be very back-to-front where the misinformation is information and what they call facts is misinformation.

When people note these groups and individuals are closer to populist politicians I do have to agree. I suspect their research is about selling an attitude towards certain individuals than it is about actual research, and indeed their treatments are always the same just with rebranding of different labels and terms that are badly elucidated into anything being produced by them in order to call people new names. I'd never call it marketing because that properly is orientation to consumer needs, but it is some form of propaganda type thing, and the title of many of these talks seems to give this away what this 'subject area' really is and focuses on.

I can't find the video that was posted recently of Sharpe at a conference doing a rather 'motivational speaker, everyone stand we can do this' stylee spiel suggesting that the sky was the limits in their ideology being applied to all people - which had the rather interesting bit in the middle where he suggests they think/thought we were deluded but they are type thing. I thought that that really is proper insight and says it all really. Personality, targeting, selling but not much real 'care', very little talk about forensics of any treatments and why they might have even thought they would help other than fake claims about mental health as a diss (using the term as a weapon by really meaning 'can't think straight/have false beliefs' as a diss, but pretending it is illness rather than just an assertion to 'get one over' and harm people) for the people with physical conditions they talk about. It feels like an out of hand and unsafe and unoversighted out of control area. That has extreme power over people which everyone knows tends to atract the wrong type of individuals too and so should have much more regular and close oversight than normal areas.
 
Andy said:
Trial By Error: Usual Suspects Say NICE Made Eight Errors; Nonsense, Says Committee Member Adam Low

"The usual suspects—several dozen of them—are apparently about to publish a cri de coeur outlining their objections to the ME/CFS guidelines issued in October, 2021, by the UK’s National Institute for Health and Care Excellence (NICE). The upcoming article is expected to appear in the Journal of Neurology, Neurosurgery, and Psychiatry. Not surprisingly, the lead author is our old buddy, Professor Peter White, one of the three main investigators of the now-discredited PACE trial. His PACE co-leads, Professors Michael Sharpe and Trudie Chalder, are also signatories, along with a glittering array of other stars of the biopsychosocial firmament."

https://www.virology.ws/2022/12/29/...rors-nonsense-says-committee-member-adam-low/
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Do we have a transcript of this?

Turns out that could be useful for any comment on the freshly published IQWiG report on ME/CFS. (see News from Germany thread)

Apologies, now too unwell to link and explain in more detail: The report does include a summary of recommendations by other national institutes like the (former) IOM and NICE.

Unfortunately, it also uncritically includes a summary of the criticism by Royal Colleges and Flottorp et al.

https://www.iqwig.de/download/n21-01_me-cfs-aktueller-kenntnisstand_abschlussbericht_v1-0.pdf


Criticism on the NICE guideline pp. 172-173


I think that warrants to be rebutted in any coverage.
 
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Thanks Andy.

Haven't even been able to listen to it yet -- just expect that it's as instructive as Adam's rebuttal of Fiona Fox's inaccuracies about research on ME/CFS and about patient activism in her recent memoir.

At least just recalled that Brian Hughes posted a prebuttal of the announced 'eight errors' criticism on his blog, too:

Eight (or more) logical fallacies in that paper bemoaning the new NICE guideline for ME/CFS - The Science Bit

https://thesciencebit.net/2023/01/1...-bemoaning-the-new-nice-guideline-for-me-cfs/

Anyway, a rebuttal of the summary in the IQWiG report might need to address additional or different points to the announced opinion piece by the NICE critics that is not quoted by IQWiG as it hasn't been published yet (hopefully never will).

The references in the IQWiG report are:

147. Torjesen I. Exclusive: Four members of NICE's guideline committee on ME/CFS stand
down. BMJ 2021; 374: n1937. https://dx.doi.org/10.1136/bmj.n1937.

148. Royal College of Physicians. Medical leaders sign joint statement in response to NICE
guidance on ME/CFS [online]. 2021 [Zugriff: 17.11.2022]. URL:
https://www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-
guidance-mecfs.

149. Turner-Stokes L, Wade DT. Updated NICE guidance on chronic fatigue syndrome. BMJ
2020; 371: m4774. https://dx.doi.org/10.1136/bmj.m4774.

150. Flottorp SA, Brurberg KG, Fink P et al. New NICE guideline on chronic fatigue syndrome:
more ideology than science? Lancet 2022; 399(10325): 611-613.
https://dx.doi.org/10.1016/S0140-6736(22)00183-0.


Forum thread on 150 here.

Sure the other three have been torn apart on the forum too.


:ill::asleep:
 
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cognitive behaviour therapy in chronic fatigue syndrome
Last edited 11/2021 and last reviewed 11/2021

A randomised controlled trial with 12-month follow-up was undertaken at the infectious diseases department outpatient clinic in Oxford, UK. 60 consecutive patients with chronic fatigue syndrome were included in the study. Various exclusion criteria were used including if the patient was receiving psychotherapy or antidepressant drugs that reduced symptoms.

Half of the patients were allocated to medical care alone and half were allocated to cognitive behaviour therapy plus medical care. The latter group of patients exhibited improved function in comparison to the group receiving medical treatment alone (1)

NICE state that with respect to symptomatic management in ME (myalgic encephalitis)/chronic fatigue syndrome (CFS)

Cognitive behavioural therapy (CBT)

  • CBT should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness
  • the NICE committee
    • "..wanted to highlight that cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS. However, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness..."
    • "..The committee agreed if a child or young person would like to use CBT, it was important to adapt the therapy taking into account their cognitive and emotional maturity..."
    • ".. The qualitative evidence showed that people with ME/CFS have found CBT useful when delivered by a therapist who understands ME/CFS, but also that there is the potential for harm when it is inappropriately delivered. To avoid this, the committee made the recommendation about who should deliver CBT and the clinical supervision they should have..."
Reference:

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https://gpnotebook.com/simplepage.cfm?ID=-1395654601
 
Not sure if this has been noted before. As we know, the RCGP has stood firmly against the updated guideline, rejecting it on the same basis as the PACE ideologues have, partly for having "invented" a new definition of the illness by requiring PEM/PESE, and standing firm in advising against pacing and insisting that CBT and GET are effective treatments.

Apparently a Long Covid charity has co-produced a guide called "Primary care assessment and treatment of the patient with Long Covid" with the RCGP, which features recognition of what they call "Fatigue with PESE", for which it recommends pacing, as opposed to "Fatigue without PESE", for which they still consider it deconditioning and advise GET. The guide also recognizes POTS and other problems, in other words not ideologically insisting that it's fatigue and nothing but fatigue.

It's not in any way a great resource, it doesn't appear to be an official thing, but it looks completely absurd and incoherent given their opposition to the ME guideline, which is far superior to this but overlaps with. So this is basically a worse version of it, but it features many of the things they object to, but it still recommends CBT & GET and that's a main point of contention. They clearly don't understand PEM or LC much, though.

And really it's not great by any measure. It frames shortness of breath as dysfunctional breathing. It still advises CBT and GET, and any patient would easily find far better resources elsewhere. Produced in collaboration with Long Covid SOS: https://www.longcovidsos.org/gp-leaflet. I think they're one of the "it's not ME/CFS" ones, but I may be wrong.

It also refers to this booklet on "Chronic fatigue after Covid-19", which is a mix of generic fluff, the old nonsense and other things that aren't all wrong, and seems inspired by something similar to the Adaptive Pacing Therapy of PACE, featuring a lot of notebooking and finding a baseline: https://www.shu.ac.uk/advanced-well...manage-chronic-fatigue-brought-on-by-covid-19.
 
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