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

https://apcp.csp.org.uk/news/2021-1...-outlines-steps-better-diagnosis-management-1

APCP (The Association of Paediatric Chartered Physiotherapists)

NICE ME/CFS guideline outlines steps for better diagnosis and management
NICE has published its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS)

05 NOVEMBER 2021

(...)

PUTTING NICE GUIDANCE INTO PRACTICE

APCP is keen to hear from any member who uses NICE guidance to enhance their services for babies, children and young people.

Please contact the APCP NICE Guidelines Officer to share your experiences of putting NICE guidance into practice.

 

So the professional bodies' representatives preferred to hide their names in a paywalled BMJ article.

Anyone else was surprised that the RC of Paediatricians didn't sign the joint statement?

Also, I thought it's interesting that, if I looked properly, of all the signatories the Royal College of Physicians was the only one that put the statement on its website. (I checked all other colleges and faculties websites' news / news and views / statements websites.)

(Still not able to catch up with the thread so apologies for one again just popping in.)

Edit: typo in Paediatr....

 

Can someone please contact Brian in the following thread (https://forums.phoenixrising.me/thr...me-cfs-for-3-years.40617/page-15#post-2374419)?

He wants to know what we think of the new NICE guidelines, he is too unwell to read it himself. I feel bad for him, he has been sectioned for years, no body replied to his post.

 

An article on the new NICE guidelines and the fallout from the Royal Colleges in the Canary, see https://www.thecanary.co/opinion/2021/11/08/nices-new-me-guidelines-wont-stop-the-whitewash-of-the-disease/?fbclid=IwAR0hEP6S1EMLd1-qQdWFHpIxXOURzMnjntNUmGyuHF25n7okQKFvNr0pBxs

 

I've not been firing on all cylinders of late, so haven't been paying too close attention to the RC shenanigans, but it feels like they have gone dark since the toy throwing episode. Would that be a vaguely accurate assessment of things? Doubt we have heard the last of them, but perhaps they have finally started to read the room a bit ( wishful thinking).

Anyone aware of what the UK ME charities are doing now/next with the GL having been published? They too seem to have gone quite quiet.

I've also not seen any more FOI responses from NICE, I am following a number of them on WDTK.

Sorry, feel like I'm playing catch-up a bit.

 

MEA has another NICE related poll:

"Dr Shepherd, Honoray [sic] Medical Adviser to the MEA explains why we've asked this question in our November poll on our Facebook here:

Code:

https://www.facebook.com/meassociation/posts/4539214056136217

 

https://twitter.com/user/status/1457635898217074690

 

My understanding is that charities are now focussing on implementation--i.e., how to get the clinics to actually do what's in the guidelines.

I think this is sensible. There's a lot of work to do in getting medical education out there and we can make the clinics feel that, at long last, they can work with charities instead of being pitted against them.

 

From another thread:

 

I would have thought that getting the NHS England website to clearly explain just what is in the new guidelines would have been top of 'the list of things to do' followed by the other NHS sites then there is a clear point of reference to what is required.

The biggest omission is no information on PEM, which needs to be put in as the defining symptom of ME.
As it stands individual clinics can all make their own interpretations and cherry pick from the guidelines.

 

Merged thread

Video: NICE u-turns on exercise therapy for ME sufferers: Alison Whale welcomes the move

TWR-UK

Alison, a blogger and advocate for people with disabilities and ME, tells Dave Piper that the use of GET and CBT originally came from an unwillingness by medics to believe ME/CFS sufferers had anything physically wrong with them. Alison says the retraction of advice by NICE is long overdue, and now fits with worldwide scientific understanding of the condition.

https://www.youtube.com/watch?v=xTloIWghZPA

eta:

 

24 health professionals, including Wyller, Fors, Reme and other known names from the biopsychosocial brigade have written a response. They seem rather furious.


Debatten om ME er IKKE over!
google translation: The debate about ME is NOT over!

There is no professional disagreement that changes in the immune system, nervous system and hormonal system can be seen in ME. But also cognitive processes can bring about such changes, something neither the Nice report, Rønning or Saugstad can shake.

...

We know that neither cognitive therapy nor graded exercise therapy are miracle cures, but we also know for sure that it sometimes works. An obvious explanation is then that physiological processes have "tracked off", without being directly linked to what set it all in motion. In that case, it is not unexpected that a cognitive approach can make patients healthier. There is no more hocus pocus!

Rønning and Saugstad are unfortunately right that many ME patients have been treated badly in the health care system. Ironically, this is due to the same misconception that they themselves doubt, namely that mental processes can not give "real" disease.

...

If they mean that ME patients no longer should be mistrusted and ironized, we could not agree more.

If, on the other hand, they believe that treatment in the form of a cognitive approach and / or graded exercise therapy must be discouraged, we could not disagree more.

 

Does anyone here know what science they might be referring to with regards to cognitive processes changing the brain and how that applies. Is the brain (via CBT) changing symptoms or what is underlying those symptoms? And how can they tell that is what's happening?

I'd like to understand further if there is any evidence for any kind of illness that mental processes give rise to disease?

And their conclusion that it helps some -- is as always problematic. As has been said many times. Some people suffer harm, particularly from GET and no-one including them know who that might be. So they are prepared to accept that harm may occur while at the same time agreeing that patients have been treated badly.

And they have yet to show -- via evidence -- that those people who do recover with their help -- that it was in fact the treatment and not that the person was improving anyway. Because some people do. People who do no therapy at all have recovered naturally over time. But we don't know why or what percentage.

This is all old news to us. And they have been confronted with many questions many times which they have declined to answer. Instead choosing to restate their preferred message while answering nothing.

This is not how evidence works.

 

There was also an opinion piece by a psychiatrist (who among other was a co-author to Reme's Lightning Process paper).

Underlige påstander om ME-pasienter
google translation: Strange claims about ME patients

The authors don't mention that Nice refers to ME/CFS as a "medical condition" based on a biopsychosocial understanding, while "biomedical" excludes psychological and social factors in cause, disease development and treatment.

Fortunately, the Norwegian health care system is based on the biopsychosocial model that includes such conditions.

...

Nice further recommends that patients have an individual plan prepared, and that they receive broad supportive treatment that includes psychological and social factors. Graduated exercise therapy is recommended based on patients' energy levels.

Nice recommends (point 1.12.15): "Do not offer any medication or supplement to cure ME/CFS." So much for chemotherapy for ME/CFS.

 

Somebody should suggest they are made honorary fellows of the Royal College of Physicians.
It is almost as if they are parroting that RCP statement. The more I hear from Wyller and his friends the more I realise how little they understand.

 

Letter from Carol Monaghan and other MPs from the All Party Parliamentary Group on ME to NICE about the guideline.

Code:

https://www.facebook.com/CarolMonaghanMP/posts/4219523671508130

 

Thanks for this - pretty incredible.

So cognitive processes can bring about---changes in the immune system, nervous system and hormonal system

I suppose it would be too much to expect evidence to support that statement; although I suppose it depends what you mean by evidence.

 

Absolutely. When I was in hospital the nurse that showed an interest in understanding ME/CFS went straight to that site to learn more (on his phone). That was incredibly frustrating.