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

An urgent overhaul of assumption and process required.

 

Is there a thread about the media reports about the guideline quite a few quoting White and now letter in Daily Telegraph from always controversial retired doc Michael FitzPatrick saying he agrees with White saying
'This has been welcomed by ME activists who are delighted that graded exercise therapy has been repudiated, though an authoritative systematic review found this to be 'helpful'.'
Not sure if energy enough to reply and cant find original telegraph article.
DtLetters@telegraph.co.uk

 

NICE ME/CFS guideline outlines steps for better diagnosis and management

https://www.wired-gov.net/wg/news.n...+diagnosis+and+management+01112021111500?open

 

Just to reiterate the points that:

(1) Scotland is outside the NICE Guideline but what goes on in Scotland is a) important to Scots PwME ! and b) may influence what happens elsewhere in the UK.

(2) that there are currently no clinics in NI.

(3) that the 3 clinics that did operate in Wales appear to have ceased in the face of COVID.

and

(4) that the clinics in England only cover a small proportion of the population - perhaps as low as 20%.

This complexity means that dealing with how the existing/future clinics operate needs to be a co-operative process across the UK, and needs to be set in the context of how 100% of PwME access services.

That the clinics have been a focus of 'unhelpful' research is a function of which clinics are associated with certain academics, and that in turn is a function of what and how services are provided - and vice versa. The academics influence the form of service provision - which in turn predicts the research that it is done which in turn eats the tail of the service that is provided. The setting up of new services associated with academic institutions fresh to the field and supportive of the 2021 Guideline would be one way to balance research output.

However the main focus of stopping poor CBT & GET research in the UK should probably be the body that funds most of it - the NIHR. Discussions on that in this thread: https://www.s4me.info/threads/how-c...ing-wasted-on-more-low-quality-studies.22862/

 

I was just about to share this article, thanks for raising it.

So many annoying aspects to this piece - that it's being positioned as supported by activists and that we are suffering from 'tiredness', calling it 'chronic fatigue'..

But, as with the RC's release, there's no actual evidence being given, just reference to 'an authoritative systematic review' and referring to an un-named 'CFS expert' and just by referring to CFS alone, feels deliberately provocative and tee'd up by the BPS brigade. Grr..

Here's the article:

https://www.telegraph.co.uk/health-...w-guidelines-chronic-fatigue-treatment-fudge/

-- From being the paywall..

After prolonged delays and recriminations the long awaited guidelines on the treatment of chronic fatigue syndrome or ME have finally emerged from NICE – in a fudge.

Chronic fatigue (CFS) is thought to affect more than 250,000 people in Britain, causing a wide range of symptoms including muscle pain, headaches and flu-like symptoms, but the main one being extreme tiredness.

Exercise has been shown to relieve symptoms for some, though many patients find that overexercising makes them feel worse. Previously, NICE recommended the use of “graded exercise therapy” – a treatment involving gradually increasing physical activity.

The new guidance recommends that patients should judge their own “energy limit” when undertaking exercise of any kind and any such exercise should only be undertaken under specialist supervision.

This has been welcomed by ME activists who are delighted that graded exercise therapy has been repudiated, though an authoritative systematic review found this to be “helpful”.

Doctors have consistently raised concerns over the scrapping of exercise therapy as an option to be used with some patients. Such was the level of disagreement among the committee producing the guidance, due to be published in August, that three members resigned and one was forced to stand down.

One CFS expert told me: “This is a fudge. It looks like they have dumped graded exercise therapy to please the activists but are allowing the clinics to give it another name.”

I share the concern expressed by Professor Peter White that the new guidelines seem to suggest that patients should learn to live with their symptoms rather than be helped to overcome them.

 

Thanks for that, but i cant even find the manuals in among all that, it's too much information. My brain cant sift through & select for some reason, i think thats why i find it hard to find posts in threads.

Hopefully someone will link to the actual quote. I have an idea that @Barry posted it? Its where it talks about GET being words to the effect of 'keep going even if it creates more symptoms because the fatigue is normal bodily reaction & need to acclimate/rehabituate the body to the extra activity (or something like that)

 

JemPD, perhaps it was Barry's post quoting from the PACE manual for GET therapists? (The quotes come from page 51 under Preventing and Managing Setbacks.)

 

@Dx Revision Watch

You mentioned something about resignation dates here. Did you get any confirmation on if they resigned before or after they signed off on everything?

 

I think I have a CBT manual for the PACE trial, I'll dig it up.

 

It looks to be dated 2002 (so that's how I put it in my files, although from the title I think it was also part of the original PDF's name). I don't know if it is the final used version or from e.g. an application for funding, as I am not so much at home with the PACE trial. (Someone else might have that answer.)

 

Assuming their links work, the manuals are available here, https://www.qmul.ac.uk/wolfson/research-projects/current-projects/projects/pace-trial.html#papers

 

They do not need to be on the committee at all. They should be asked to submit evidence but professionals in other medical fields should be perfectly able to decide what is valid evidence. This is how a court of law works, and it tends to work very well (in Europe) in my experience.

 

They're under the "Trial information" tab @JemPD

 

Page 28 of the PACE trial CBT manual for therapists.

I thought it might be of interest for people responding to the RC nonsense. (If I'm posting in the wrong thread, then I'm sorry mods!)

 

On 29 October, ie the day after publication, I finally received a response to my 28 days overdue request:

1. The date on which Quality assurance for guideline: Myalgic
encephalomyelitis (or encephalopathy)/chronic fatigue syndrome:
diagnosis and management In development [GID-NG10091] was signed off.

Response: The guideline was signed off on 08 July 2021.

2. The date on which the NICE Pathway (everything NICE says on a topic in
an interactive flowchart) and any supporting resources were signed off
for quality assurance.

Response: Information not held. A NICE Pathway is an alternative
representation of other NICE guidance, the content is the same. The
content was signed off under 1 and 3.

3. The date on which NICE's Guidance Executive signed off guideline
GID-NG10091.

Response: NICE’s guidance executive approved the guideline for embargoed
release on 30 July 2021.

-----------------------

I had already received the information under FOI that the three committee members had resigned on 26 July.

As Quality assurance was signed off on 8 July, then the Guideline Committee must have signed off before 8 July, well before the 26 July resignations.

And as Trish has said, the Minutes of the Roundtable state that the committee members signed off on the guideline before resigning (on 26 July).