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

CRG said:
Which raises the question "if the NHS isn't using GET, then what is the evidence that the use of this 'other' treatment is of any benefit ?

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Yeah. It's funny how all the CFS/ME clinics (up until yesterday) were claiming they offered 'NICE recommended CBT and GET (as per the 2007 guidelines)' but now they claim they haven't been doing them for several years!
 
These are the people who think Parker's review of his own work that he makes a fortune from is good evidence.

All this compassion for patients and fear that they will suffer under these new guidelines. In 37 years they have done nothing for me, worse than nothing because I am treated badly because of their theories.

I am seething.
 
Adam pwme said:
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It's just sour grapes. They had their chance at consultation, and then at roundtable, and they weren't able to make a convincing argument.

I think it's very clear that patient groups should support patients who are harmed by stealth GET, and should support them in suing the pants off the RCs and any clinicians involved.

They might change their minds very quickly when they realise that going against the NICE guidelines opens them up to legal culpability ("You knew what best practice was but opted to do what you wanted. You are to blame." Etc, etc).
 
c37 said:
Apologies if already posted. Very interesting that the Science Media Center not only gave a range of opinions in their rapid response. But Prof Kevin McConway , a Trustee of the SMC gave a very long and 'detailed' quote supporting the process applied to the M.E Nice Guideline development. Also the negative quotes are limited to the few usual suspects. Are times a-Changin at the SMC?
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Would be nice to think so.
 
So, (some of) the Royal Colleges have turned their attention to commissioning, which we always knew would be the next battle to fight.
We also do not think the changes represent the positive discussions that have been had with patient groups.
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Which patient groups are these? Are they referring to the RT?
specialist rehabilitation medicine services and exercise medicine services
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Again, sounds as though they're being influenced more by the rehab-medicine crowd like Wade & Turner-Stokes than psychosomatics.
Many patients with ME/CFS have other conditions including chronic pain and fibromyalgia which are improved with exercise as recommended in other NICE guidance.
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This is a potential danger. Unlike, say, "bodily distress disorder" or "somatoform disorder", fibromyalgia is a diagnosis that could readily be given to, and would be accepted by, many patients in whom widespread or diffuse pain is a feature of their ME. (I believe there are some other features, such as cervical tender points, in formal criteria for fibromyalgia but suspect these are fairly prevalent in the general population anyway.)
 
"Many patients with ME/CFS have other conditions including chronic pain and fibromyalgia which are improved with exercise as recommended in other NICE guidance. It is important that a holistic approach is taken to ensure that other conditions do not deteriorate." - Royal Colleges

This statement is sadistic, and the bad faith is hopefully obvious to others including their members
 
Mithriel said:
These are the people who think Parker's review of his own work that he makes a fortune from is good evidence.

All this compassion for patients and fear that they will suffer under these new guidelines. In 37 years they have done nothing for me, worse than nothing because I am treated badly because of their theories.

I am seething.
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Me too Mithriel, this statement is UTTERLY, UTTERLY beyond appalling and doesn't bode well for anything changing.

Really depressing.......and after decades of this abuse I'm not easily depressed.
 
BMJ News

https://www.bmj.com/content/375/bmj.n2643

ME/CFS: Exercise goals should be set by patients and not driven by treatment plan, says NICE
BMJ 2021; 375 doi: https://doi.org/10.1136/bmj.n2643 (Published 29 October 2021)
Cite this as: BMJ 2021;375:n2643

Ingrid Torjesen

Author affiliations
London

Graded exercise therapy (GET) should no longer be used to treat patients with myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS), says the National Institute for Health and Care Excellence in long awaited updated guidance.1

Patients may still be offered exercise programmes provided they are not based on fixed incremental increases in physical activity or exercise. Instead, programmes should be based around person centred energy management, which is a self-management strategy led by the patient with support from a healthcare professional in an ME/CFS specialist team, the guideline advises.

Energy management should consider all types of activity (cognitive, physical, emotional, and social) that help patients learn to use the amount of energy they have, while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits.

Cognitive behavioural therapy has sometimes been assumed to be a cure for ME/CFS, the guideline acknowledges. Now it should be offered only to help people manage their symptoms, improve their functioning, and reduce the distress associated with having a chronic illness.

The final 2021 guideline shows a real change of emphasis from the previous guideline published in 2007, which said that cognitive behavioural therapy…

[The rest is behind a sub or log in]
 
c37 said:
Apologies if already posted. Very interesting that the Science Media Center not only gave a range of opinions in their rapid response. But Prof Kevin McConway , a Trustee of the SMC gave a very long and 'detailed' quote supporting the process applied to the M.E Nice Guideline development. Also the negative quotes are limited to the few usual suspects. Are times a-Changin at the SMC?
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There was always going to be a limit beyond which the SMC could continue its exclusion of other voices - there are number of things that have contributed to the limit being reached, of course the Guideline itself has moved things along but the institutions that back the SMC aren't going to be happy with the SMC pushing faces that no longer attract research bucks or at least good press. There's still SMC insiders who are politically/culturally aligned with the BPS factions but money and influence have a stronger pull and the BPS folks are losing both.
 
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