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

From The National:

ME patients recommended new treatments by health watchdog

GRADED exercise therapy should no longer be recommended for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a health watchdog has said, in a victory for campaigners.

New guidance from the National Institute for Health and Care Excellence (Nice) on ME had been due in August, but was put on hold following concerns from some groups over its contents.

It is thought some health professionals had been unhappy with some of the recommendations made by Nice.

Open access, https://www.thenational.scot/news/n...atchdog-no-longer-recommends-graded-exercise/
 
On the Guidance Overview page:

https://www.nice.org.uk/guidance/NG206

what is the significance of the Royal College of Physicians logo at the bottom of the page, above the "NICE accredited" logo?

I've had a look at some other recently published guidelines and some just have the "NICE accredited" logo at the foot of the page, or the NHS logo. This one also has the RCP logo:

https://www.nice.org.uk/guidance/ng196
 
Have we got this (I'll remove if we have).

BACME Press statement:

https://www.bacme.info/sites/bacme.info/files/BACME Press Statement NICE Guideline publication Oct 2021.pdf

The new NICE Guideline on ME/CFS was published on 29th October 2021
This is BACME’s response to the publication:

October 2021

BACME welcomes the new NICE Guidance on ME/CFS in the hope that this will support continued progress in improving the quality of life of all people who have the complex illness ME/CFS.

Clinicians working in NHS specialist ME/CFS services strive to provide high quality care and support to people with ME/CFS while recognising that there is still a long way to go with our understanding of the condition and we do not yet have a robust evidence base on which to guide treatments and therapy approaches.

The new NICE guideline provides information regarding diagnosis including the importance of recognising the key symptom of Post-Exertional Malaise. The guideline has also clarified the use of the term Graded Exercise Therapy (GET) and, in a change from the previous guideline, it has now restricted use of the term GET to describe therapy programmes based on treating deconditioning. The symptoms of ME/CFS are not caused by deconditioning.

This guideline marks the move away from using GET programmes for treating ME/CFS. This is a move the majority of BACME members working in NHS specialist services have already made. BACME welcomes the fact the new NICE guideline specifies that clinicians from all disciplines delivering care to people with ME/CFS should have specialist knowledge of the condition.

BACME continues to support research which aims to provide further understanding of the underlying pathological processes that generate the symptoms experienced by people with ME/CFS in the hope this will also lead to more refined therapeutic approaches.

BACME recognises the importance of providing confident support to people with ME/CFS now and would like to see increased investment in specialist service provision to ensure equitable access for all people with ME/CFS.

BACME will use the new NICE guideline as a foundation on which to build further clinical guidance on the delivery of care to people with ME/CFS and work to ensure that the patient story is heard and embedded in the future of ME/CFS care.
 

Attachments

adambeyoncelowe said:
making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits.
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Also avoiding exacerbating symptoms. I remain concerned with the concepts of 'energy' limits and management. Still anchored too much to the fatigue thing for my liking.

But it is a huge and critical step in the right direction.

I think now it has the formal stamp from the clinic guidelines authority, most of the health system will follow on fairly quickly, with a bit of prodding as required.
White says that
"this guideline seems to suggest that patients need to learn to live with CFS/ME, rather than be helped to recover from it."
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Says somebody whose own work completely failed to establish any benefit from his approach, let alone recovery.
Wonko said:
I would dispute this - anyone for a trial?

we'd need a wall, some fish, and a load of GET/CBT advocates.

£8,000,000 should fund it.
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Only if you promise to wear your Equipoise Socks™.

–––––––––

BACME sayeth:
we do not yet have a robust evidence base on which to guide treatments and therapy approaches....

BACME recognises the importance of providing confident support to people with ME/CFS now and would like to see increased investment in specialist service provision to ensure equitable access for all people with ME/CFS.
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What will these expanded specialist services be providing, beyond diagnosis and help with access to support services and social security?
 
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Dx Revision Watch said:
Can't access this. It says I need to be logged in, although I am already logged in.
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InitialConditions said:
I often have to re-login on this site, even though I'm already logged in. Never sure why... It's probably a browser cookie issue.
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There is an issue in that I've not mapped s4me.info to www.s4me.info. So they are different URLs and recognize as such by browsers (having realized I hadn't done this originally I decided not to since it could cause people some password issues (depending on how browsers remember passwords).
 
Dx Revision Watch said:
On the Guidance Overview page:

https://www.nice.org.uk/guidance/NG206

what is the significance of the Royal College of Physicians logo at the bottom of the page, above the "NICE accredited" logo?

I've had a look at some other recently published guidelines and some just have the "NICE accredited" logo at the foot of the page, or the NHS logo. This one also has the RCP logo:

https://www.nice.org.uk/guidance/ng196
Click to expand...

NICE is partly based within the Royal College of Physicians and I think the staff that undertake the guidelines evidence compilation and review process are employed by the College, though I may have got that wrong.

This was a potential worry when the new guidelines were paused in part because of interference by various medical Royal Colleges including the Royal College of Physicians, but in retrospect it could even have worked in our favour.
 
I don't think this has been posted yet:

Technology Networks: Neuroscience news -

https://www.technologynetworks.com/...rcise-therapy-recommendation-for-mecfs-355265

The UK National Institute for Health and Care Excellence (NICE) has released long-awaited guidelines on the treatment of myalgic encephalomyeltis/ chronic fatigue syndrome (ME/CFS), which scrap previous recommendations for graded exercise therapy (GET) for the condition.

It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men.

The guideline covers every aspect of ME/CFS in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review.

Peter Barry, Consultant Clinical Advisor for NICE and chair of the guideline committee, said: “This guideline will provide clear support for people living with ME/CFS, their families and carers, and for clinicians. It recognises that ME/CFS is a complex, chronic medical condition that can have a significant effect on people's quality of life.

“We know that people with ME/CFS have had difficulty in getting their illness acknowledged, and the guideline provides guidance for suspecting and diagnosing the condition, recognising that there is no specific test for it. The guideline emphasises the importance of a personalised management plan for areas such as energy management - including the importance of rest and staying within the individual’s energy limits - the treatment of specific symptoms, and guidance on managing flares and exacerbations.”

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.

Read the new guidelines here: https://www.nice.org.uk/guidance/ng206


This article has been republished from the following materials. Note: material may have been edited for length and content. For further information, please contact the cited source.
 
I am assuming it is now OK for us to link to Valerie Eliot Smith’s blog, as her previous sharing of embargoed material no longer risks compromising our confidentiality agreements.
Mod note: yes, it's fine.

Her latest posting on the new guidelines is interesting in that it presents a contrasting view on NICE’s conduct:

NICE publishes updated guideline for “ME/CFS”
[...]
The publication of the new guideline follows an abject failure of due process by NICE. The new document was due for final publication on 18 August 2021 but this was “paused” at the last minute as a direct result of external interference by representatives of the Royal Colleges and NHS England.

This unprecedented “pause” in publication has caused completely unwarranted distress to millions of members of the international ME community as the newly published document is broadly similar to the previous unpublished version …

[...]

STATEMENT ON THE UPDATED NICE GUIDELINE

The new NICE guideline for the illness termed “myalgic encephalomyelitis/chronic fatigue syndrome” or “ME/CFS” is a small but welcome step in the right direction.

While there is still a long way to go and the new guideline is very far from ideal, the removal of the most harmful treatment recommendations is a significant milestone on the road to proper recognition and treatment for this extremely disabling, occasionally fatal, illness.

[...]

Whatever happens now, it is too late for the millions of patients worldwide who have already died during the last century of “ME/CFS” disbelief. Many patients never had their illness validated nor were they treated with respect and compassion in their lifetimes.

The time has come to call for an independent public inquiry into the history of the treatment of “ME/CFS” patients. Without such an inquiry, the systemic injustice and abuse experienced by patients cannot begin to be addressed.

This guideline opens up a new chapter in the shameful history of this maligned illness. The opportunity to redress the wrongs of the past and create a better future must be seized with urgency and enthusiasm.

[...]

more at link:
see https://valerieeliotsmith.com/2021/...bQGbuPCtEDpKN-urV67kdVAu2in1KdmNVmo_2aS3ykhjI
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I personally feel Valerie has been unfair to NICE: though I agree their communications were not good in relation to the pause in publication, I do think they have been all along, once deciding to rewrite the guidelines, honest brokers and that in retrospect their action during the pause ultimately has been in the best interests of the new guidelines and people with ME.

However, I do agree that some consideration as to how the wrongs of the passed are now addressed will impact on how well we are able to move forward implementing and building on the new guidelines.

[edited for clarity]
 
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Peter Trewhitt said:
However, I do agree that some consideration as to how the wrongs of the passed are now addressed will impact on how well we are able to move forward implementing and building on the new guidelines.
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There's a balance to be made between maintaining momentum and analysing what has passed so as to inform progress; I'd always err on the side of momentum. Unless one is very, very good at presenting balanced histories, dredging around in past wrongs frequently comes out as no more edifying than the embittered ventings of a scorned ex.

And I certainly wouldn't begin a 'truth and reconciliation' process with dubious historical contentions about when an illness was or wasn't first identified.

edit to remove phantom words !
 
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If it hasn't been mentioned yet, the Royal Colleges of GP's in their consultation refer to PP's own review of LP :O
Royal Colleges of General Practitioners said:
There has been a recent systematic review of the Lightning Process, published in August 2020. It found a variance in the quality of studies from good to fair and in reported patient outcomes. It concluded, however, that all studies evidenced a level of benefit from the intervention, commonly for the majority of participants.
Other relevant evidence can be found at:
https://adc.bmj.com/content/103/2/155

https://lightningprocess.com/research/

Based on the review, it is unclear whether NICE has sufficiently considered this evidence.
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Sean said:
What will these expanded specialist services will be providing, beyond diagnosis and help with access to support services and social security?
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I wonder what's the best space for the community at large (including the charities) to discuss this – or is it already happening?

It's important to let clinics/trusts know what services patients want and need, and this seems a good moment to get the conversation under way. First 100 days and all that.
 
Manchester man with ME’s relief as ‘harmful’ therapy ditched from treatment list
"
A Manchester man who has ME has spoken about being involved in the long campaign to get a harmful exercise therapy removed from the list of treatment operations for patients.

Adam Lowe, from Salford, was involved in workshops which brought together patients, scientists and medical experts to discuss the effect of using graded exercise therapy.

Now the guidelines at the National Institute for Health and Care Excellence (NICE) have been updated to remove graded exercise therapy from the treatments to be offered to people with myalgic encephalomyelitis.

The move marks a successful end to more than 10 years of campaigning by patients, charities and organisations."

https://www.manchesterworld.uk/news...-people-with-chronic-fatigue-syndrome-3437198
 
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