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

Why would you want to use exercise as treatment for ME/CFS when it's the best method for triggering postexertional malaise?

I think GET was an experiment in graded exposure therapy that sought to desensitize patients by repeatedly triggering PEM.
 
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Kitty said:
Yep. I hadn't realised that inclusion of PEM as a required symptom was even an issue outside of small research studies with frustratingly loosely-defined cohorts, until all the bleating about NICE having made it up. There needs to be yet another (sigh) discussion about agreeing which case definition must be used.

I even wondered last night whether the selection criteria established for DecodeME might come in useful. Probably not useful/appropriate in a clinic, but if they aren't even starting from the basis of a rigorous diagnosis, any evidence they gather is absolutely bloody useless.
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wyller is giving a talk on diagnostic criteria, if it hasn't been held already. I need to look into that, he has previously argued that the criteria don't matter (but also used the canadian criteria as a quality mark in the proposed LP study that got cancelled).
 
I don't have the brain space to do this, but for those interested in the legal angles going forwards it might be worth collecting and saving quotes from those saying they were not doing GET anyway. As that means they were a) not upfront with patients about what treatment they were offering, if they thought they were receiving GET so no informed consent and b) not following what the so called "evidence" at the time said. So anyone harmed by undertaking what they thought was GET at one of these institutions could possibly sue?

I liked the question someone (sorry i can't find it now) posted earlier on this thread about, if they all had stopped doing GET and were doing something else, why? What made them change from what their precious "evidence" said. To me, this is either revising history or they were actually seeing the harms but not reporting them, simply adapting their own centre's therapy model but leaving all other patients to suffer. Neither is a good look for them.

Final thought, it wouldn't be too hard to see if they were or weren't pushing GET / curative CBT as most places give their patients a handbook. It will all be there in black and white. Perhaps there could be a space for anyone who has been on one of these courses to upload their handbooks. Or perhaps these could be gained through freedom of information.

I'm not able to do anything with these thoughts, but perhaps someone else is.
 
Kirsten said:
for those interested in the legal angles going forwards it might be worth collecting and saving quotes from those saying they were not doing GET anyway. As that means they were a) not upfront with patients about what treatment they were offering, if they thought they were receiving GET so no informed consent and b) not following what the so called "evidence" at the time said. So anyone harmed by undertaking what they thought was GET at one of these institutions could possibly sue?

I liked the question someone (sorry i can't find it now) posted earlier on this thread about, if they all had stopped doing GET and were doing something else, why? What made them change from what their precious "evidence" said. To me, this is either revising history or they were actually seeing the harms but not reporting them, simply adapting their own centre's therapy model but leaving all other patients to suffer. Neither is a good look for them.

Final thought, it wouldn't be too hard to see if they were or weren't pushing GET / curative CBT as most places give their patients a handbook. It will all be there in black and white. Perhaps there could be a space for anyone who has been on one of these courses to upload their handbooks. Or perhaps these could be gained through freedom of information.

I'm not able to do anything with these thoughts, but perhaps someone else is.
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Yes we need this maybe group effort?
 
Kitty said:
Yep. I hadn't realised that inclusion of PEM as a required symptom was even an issue outside of small research studies with frustratingly loosely-defined cohorts, until all the bleating about NICE having made it up. There needs to be yet another (sigh) discussion about agreeing which case definition must be used.
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And I hadn't even thought about that. My thinking was: if GPs have no specialist service to refer a patient for diagnosis, then the GP has to have the knowledge, means and funds to ensure all the relevant exclusionary tests are done to ensure the patient doesn't have something that is treatable and/or demands urgent specialist involvement. At present I doubt whether more than fraction of GP surgeries could guarantee even this basic level of care. I can't locate it atm but one of Julia Newton's studies showed unacceptable levels of misdiagnosis - as did some of the CDC(?) work.
 
Just recording that Robert Howard tweeted on 7:45 PM · Oct 29, 2021 (my bolding)

"I’m proud that medical leaders have stood up for patients with ME/CFS and for continued access to the evidenced treatments that can help them in the face of destructive individuals and groups who wish otherwise."​
 
News
NICE understates role of exercise and CBT in managing ME/CFS, say medical leaders

BMJ 2021; 375 doi: https://doi.org/10.1136/bmj.n2647 (Published 29 October 2021)Cite this as: BMJ 2021;375:n2647

Zosia Kmietowicz
The BMJ





Note: The statement on the Royal College of Physicians site had only listed the Colleges:

Royal College of Physicians
Royal College of Physicians of Edinburgh
Royal College of General Practitioners
Royal College of Psychiatrists
Academy of Medical Royal Colleges
Faculty of Sport and Exercise Medicine
Faculty of Occupational Medicine
 
Jonathan Edwards said:
So four of the RC signatories were at round table and did not make a squeak about knowing the treatments worked and whatever.
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Did they state that GET was not a good name and that the clinical services actually don't do GET? Did they provide any evidence that their whatever pace-based rehab approach works beyond that they've seen it in clinical practice? I mean, how are they claiming their interventions are evidence-based if it's not the interventions as described and they have no data proving the new versions are beneficial? I'm confused because it is so obviously incoherent and illogical to make these points.

Are they stupid or do they think everyone else is stupid, or maybe they're just trapped in some sort of brain warp effect?
 
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