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

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

 

It will be interesting also to see how the SMC respond. They seem to have gone quiet on ME/CFS.

 

The next meeting of the All Party Parliamentary Group for ME will include

More detail here, UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

 

Key differences between the 2007 and 2021 NICE guideline for M.E./CFS

https://www.actionforme.org.uk/uploads/pdfs/Key-differences-2007-2021-guidelines-011121.pdf

 

I haven’t read it all yet, however -
They don’t seem to mention that the 2007 guide was for CFS/ME
and the new one for ME/CFS.
That seems an important change to me.
(& why do they add the dots in M.E./CFS? NICE didn’t)

 

It seems to be a standard (odd) way they write it in most/all (?) of their publications

 

Especially odd to not also do "C.F.S." if they are going to do "M.E." Consistently inconsistent.

Edited to correct silly typo.

 

Eek! Thank you. Edited.

 

For what it's worth, the guideline is also available from NIH's National Library of Medicine here, https://www.ncbi.nlm.nih.gov/books/NBK589852/

 

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

 

You could close Garner's Twitter account!

 

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.

 

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.

 

No, as to date I don't believe it has ever been published.

 

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.

 

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.