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

Trish said:
I think the NICE policy of having guideline development groups largely consisting of self styled experts in the field is pretty disastrous. Look what happened in 2007 to ME. Look what's happened with Chronic pain and Long Covid.

Even this welcome new ME guideline is a compromise

NICE seems to have a very limited 'conflict of interest' definition. Why are the above things I've listed not immediate reasons for exclusion from guideline committees?
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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
The guideline identifies the symptoms of ME/CFS as debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties (‘brain fog’). It says that people with all 4 symptoms that have lasted 3 months or more should be directed to a ME/CFS specialist team (in the case of children this should be a paediatric specialist team) experienced and trained in the management of ME/CFS to confirm their diagnosis and develop a holistic personalised management plan in line with this guideline.

People with ME/CFS should receive individually tailored support focused on personal agreed goals and a range of approaches should be used depending on the patient's preferences and priorities.

And the guideline makes it clear that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered for the treatment of ME/CFS. Discussions with stakeholders highlighted that the term ‘GET’ is understood in different ways and the guideline sets out clearly what is meant by the term.

The importance of ensuring that people remain within their energy limits when undertaking activity of any kind is also highlighted. The guideline recommends that any physical activity or exercise programmes should only be considered for people with ME/CFS in specific circumstances and should begin by establishing the person’s physical activity capability at a level that does not worsen their symptoms. It also says a physical activity or exercise programme should only be offered on the basis that it is delivered or overseen by a physiotherapist in an ME/CFS specialist team and is regularly reviewed.

Although cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS, the guideline recommends it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness.
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https://www.wired-gov.net/wg/news.n...+diagnosis+and+management+01112021111500?open
 
ukxmrv said:
I was thinking of what we need to concentrate on now post publication. Not sure if we have one or need a new thread?

This was my list but sure to be more. Not in order of priority

1. Stop the clinics being able to carry out poor quality or dangerous CBT and GET research
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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/
 
Sly Saint said:
NICE ME/CFS guideline outlines steps for better diagnosis and management

https://www.wired-gov.net/wg/news.n...+diagnosis+and+management+01112021111500?open
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That quoted passage from the Wired article is a straight copy of the NICE press release section by Peter Barry, the guideline committee chair. A copy of the press released is linked in this post:
https://www.s4me.info/threads/uk-ni...lication-discussion.22996/page-12#post-386537

Edit: I've just checked. The whole article is a copy of the press release.
 
Forestvon said:
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
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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.
 
Sly Saint said:
https://www.s4me.info/threads/the-pace-trial.22088/

eta: tag 'pace trial'
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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)
 
You mean this?

"There are some side effects associated with the treatment of CSF (sic). These may include the following:

You will experience an initial increase in symptoms. This is natural, as in being consistent you will be being active when you don't feel like it. You will get more muscle ache, more fatigue etc. Remember - this is the bodies normal response, it does not mean a relapse of your illness. Providing that everything has been done gradually, and you have not been over ambitious, this should not be too painful, and it should pass after a few weeks at most".

https://www.kcl.ac.uk/ioppn/depts/pm/research/cfs/patients/self-help
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EDIT: Snap!
 
Fainbrog said:
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.
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@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?
 
JemPD said:
Sorry if this is off topic, but somewhere on this thread (i think) there are some quotes from the PACE trial therapists manuals on GET/CBT, but i've spent all my available strenght trying to find them. I need them for something & hoping the poster, or indeed anyone else, might see this & be able to directme to the post or the manuals themselves at somme point pls
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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.)
 

Attachments

JemPD said:
Sorry if this is off topic, but somewhere on this thread (i think) there are some quotes from the PACE trial therapists manuals on GET/CBT, but i've spent all my available strenght trying to find them. I need them for something & hoping the poster, or indeed anyone else, might see this & be able to directme to the post or the manuals themselves at somme point pls
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Assuming their links work, the manuals are available here, https://www.qmul.ac.uk/wolfson/research-projects/current-projects/projects/pace-trial.html#papers
 
petrichor said:
I don't really see how you can get away from needing people with clinical experience with the condition on the committee.
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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.
 
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!)

InkedPage 28 PACE manual therapist_LI.jpg
 
Parsnip said:
@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?
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It says in the roundtable minutes that they signed off on the guideline before they resigned.

Edit to add:

Roundtable minutes
page 3 under point 3
The whole guideline was agreed by the committee, including the recommendations on graded exercise therapy (GET) before there were resignations
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https://www.nice.org.uk/guidance/ng206/documents/minutes-31
 
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Parsnip said:
@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?
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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).
 
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