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

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.

 

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).

 

But 'you' didn't think it collegiate to ascertain what the other parties to those discussions think before staking your particular claim ?

 

Would be nice to think so.

 

I wonder why the Royal Colleges were too cowardly to make these claims at the roundtable?
Presumably because they knew they didn't have a leg to stand on.

 

Comes into the class of 'not even wrong'.

 

I missed those. I wonder if those links are static or change every so often?

 

So, (some of) the Royal Colleges have turned their attention to commissioning, which we always knew would be the next battle to fight.

Which patient groups are these? Are they referring to the RT?

Again, sounds as though they're being influenced more by the rehab-medicine crowd like Wade & Turner-Stokes than psychosomatics.

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.)

 

One begins to wonder, if the roundtable was designed to stop doctors throwing their toys out of the pram, whether after all it achieved its purpose. I think it was useful in other ways but the toy throwing seems as vigorous as it ever might have been.

 

"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

 

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]

 

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.

 

Unbelievable. But then kind of believable too.

Might blog about this... have been working on LP stuff for a while

 

I dare say that might, possibly, be pointed out in the coming hours and days. They no longer have control of all the media. Fortunately.

 

It would be interesting to know how health care professionals in other countries respond to the situation. Do other countries just take note of NICE as a reputable source or do they take note of the toy throwing as well?