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

This public thread is for general discussion of the much anticipated NICE 2021 ME/CFS Guideline including media and social media responses and other organisations' press releases.

The NICE ME/CFS Guideline Project documents page gives links to:
the Final Guideline
the Evidence Review
the Stakeholder Feedback on the Draft Guideline Thread here
the Draft Guideline

NICE guidelines website aimed at healthcare professionals - summarises new ME/CFS guideline

The Science for ME submission on the draft Science for ME submission to the NICE draft ME/CFS guideline consultation, December 2020, and submission on substantive errors, August 2021

The drafting team for the Science for ME submission had early access to the embargoed final version of the guideline and has prepared the following documents:

A press release - See the following post.
[This press release has been approved by the forum committee. It can be used in part or in full, in commentary about the guideline. It has been prepared with United Kingdom audiences in mind, but people elsewhere may find material useful for local advocacy. If you do use it, please let us know.]

A feedback document for NICE on substantive errors in the embargoed August version sent 11 August
sent: Science for ME submission to the NICE draft ME/CFS guideline consultation, December 2020, and submission on substantive errors, August 2021


A series of Members Only threads for analysis and comment on guideline sections.
At the beginning of each thread are posts analysing the changes from the draft version and providing commentary from the submission drafting team. The commentary does not necessarily reflect the view of the whole forum committee. Click through to see the analysis and add your views.

1.1 - Principles of Care
Discussion thread here
___________

1.2 - Suspecting ME/CFS
1.3 - Advice for people with suspected ME/CFS
1.4 - Diagnosis
Discussion thread here
______________

1.5: Assessment and care and support by an ME/CFS specialist team
1.6 - Information and support, needs an outline
1.8: Access to care and support
1.9: Supporting people with ME/CFS in work, education and training
1.10: Multidisciplinary care needs outline review by S
1.13 - Managing co-existing conditions
1.15 - Review in primary care
Discussion thread here
_______

1.7 - Safeguarding
Discussion thread here
_______

1.11 - Managing ME/CFS - physical activity
1.14 - Managing flare-ups in symptoms and relapse
Discussion thread here
______

1.12 part 1 - Symptom management for people with ME/CFS - sleep, diet etc
Discussion thread here
_______

1.12 part 2 - Symptom management for people with ME/CFS - CBT
Discussion thread here
_________

1.17 - Care for people with severe or very severe ME/CFS
Discussion thread here
_________

Terms used
Discussion thread here
________

1.16 - Training for health and social care professionals
Recommendations for research
Context
Discussion thread here



The final guideline has some disappointing aspects when compared with the draft. Nevertheless it represents a significant advance over the preceding 2007 Guideline, and it will make a positive difference in the lives of many people with ME/CFS. The Evidence Review, which found no reliable evidence for physical activity programmes and CBT as treatments of ME/CFS, is a sound unbiased analysis that will be very useful in advocacy.

We, the forum drafting team, would like to thank everyone who contributed to the guideline, including those who campaigned for it to be done, provided expert testimony, took part in surveys and research, the NICE staff, and especially to those who volunteered and spent over two years working hard and doing their best to contribute usefully on the guideline committee. We thank particularly the people with ME/CFS on the guideline committee who worked selflessly on behalf of the whole patient community.

 

S4ME Press statement:

New NICE guideline creates hope for change at last

The National Institute for Health and Care Excellence (NICE) has today, Friday 29 October 2021, published the guideline for Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. This follows a two month pause to publication in response to concerns expressed about some aspects of the guideline by several medical professional organisations. A roundtable meeting was held by NICE on 18 October to better understand these concerns and make clear the soundness of the development process and resulting guideline recommendations. Following this meeting, NICE Chief Executive Professor Gillian Leng stated NICE is "now confident that the guideline can be effectively implemented across the system". Science for ME, an online forum for people with ME/CFS, clinicians, and researchers, has welcomed the much-anticipated publication, calling it a paradigm shift in the care of people with this debilitating condition.

The guideline replaces the existing clinical guideline published in 2007 and aims to improve awareness and understanding about ME/CFS, provide guidance on when to suspect it to enable earlier diagnosis, and includes recommendations on access to care, symptom management and care planning.

NICE staff and the members of the guideline committee have worked for over three years to carefully examine the evidence. Science for ME commended their efforts and the resulting guideline, saying, "we believe it will lead to significant improvements in the care and support for the estimated 250,000 people in England and Wales with ME/CFS. The new guidance on diagnosis and management is particularly timely, as many people are developing the key symptoms of ME/CFS after Covid-19 infection. The guideline is a publication of international significance, providing an example of good practice that will influence ME/CFS care around the world."

The guideline makes it clear that graded exercise therapy (GET) should no longer be offered to people with ME/CFS, and that both cognitive behavioural therapy (CBT) and therapies based on physical activity are not curative. This is based on a review of the evidence, which rated the outcomes for studies of these interventions all of low or very low quality. This is a welcome and significant, evidence based change in approach from the 2007 ME/CFS guideline, in which CBT and GET were central to treatment.

It is clear from the findings of the evidence review that neither CBT nor physical activity (or exercise) programmes are effective in treating or managing ME/CFS or its symptoms. Such therapies have also been widely criticised due to their potential to cause deterioration in people with ME/CFS. It will therefore be concerning to many that the guideline includes these therapies at all, albeit in a more limited way than before.

Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, University College London, said:
"I think the committee have reached an admirable synthesis in a very difficult situation. There is a need to preserve and extend specialist facilities for people with ME/CFS, making use of the experience of dedicated health care professionals, but there is also a need for a clean break with treatment protocols not supported by evidence and based on discredited theory. If future training of health care professionals genuinely follows the spirit of the guideline then a lot may be achieved. The break from theory-driven care needs to be real, however, not simply replacing a discredited theory such as deconditioning with another equally unsupported."

Recommendations focused on people with severe ME/CFS, who may be bed-bound, hypersensitive to light and sound, and in some cases require tube-feeding, should lead to significant improvements in awareness and access to care. Severely affected members of the Science for ME forum have welcomed this specific guidance with enormous relief, suggesting it will help them with engaging with social services, accessing both care at home and hospital care, and will make every aspect of life easier.

The guideline includes a recommendation on awareness of the prejudice, stigma and disbelief people with ME/CFS may have experienced and the impact this may have had. This is an essential inclusion, particularly in light of the current lack of knowledge and understanding of ME/CFS among health and social care professionals.

Science for ME has commented:
"We believe the guideline provides a detailed blueprint for the provision of more respectful and supportive care of people with ME/CFS, even though there are currently no treatments for the disease itself. But it will take a concerted effort to implement it. Better training and awareness should see an end to inappropriate assessments under mental health legislation and child safeguarding proceedings. We hope that clinical commissioning groups will review this guideline carefully and work with patient representative organisations to provide better, guideline-compliant medical services for people with ME/CFS, who have been poorly served for so long."


For further media enquiries, please reply to this email address.

Useful links:

- What is ME/CFS? See Sections 1.1 Principles of care for people with ME/CFS and 1.2 Suspecting ME/CFS of the new guideline.
- Why is this guideline so different to the previous one? https://thesciencebit.net/2021/08/1...the-new-nice-guideline-ask-about-the-old-one/
- Why is so much ME/CFS research rated as very low quality? Read Professor Jonathan Edward's expert testimony: https://www.nice.org.uk/guidance/gid-ng10091/documents/supporting-documentation-3
- What is DecodeME? The world's largest ever DNA study of ME/CFS and an example of carefully planned research that is currently underway. Find out more here: https://www.decodeme.org.uk
- What do severe and very severe ME/CFS look like? https://www.dialogues-mecfs.co.uk/films/severeme/
- Inappropriate child protection proceedings related to children with ME/CFS:

Code:

https://www.youtube.com/watch?v=EyihXLvz1hY&t=15s

 

This post will be used to link other threads with relevant information and discussions.

NHS website pages on ME/CFS updated 29th October 2021 (NICE publication date)

NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

For the weekly summary of developments with links to sources and threads, see the News in Brief.

 

The Times running article, but behind paywall so can’t see all of it

https://www.thetimes.co.uk/article/me-patients-wont-be-told-to-do-more-exercise-c0k39tp7n

 

"Victory for campaigners" ugh I hope this is taken out, that is not how it works

 

And Gaurdian

https://amp.theguardian.com/society/2021/oct/29/health-watchdog-nice-publishes-delayed-me-guidance

BBC

https://www.bbc.co.uk/news/health-59080007.amp

 

"The NHS describes CFS or ME as a long-term illness with a wide range of symptoms, the most common of which is extreme tiredness." From the Times

This appears to be from the horrible NHS website. Does anyone have any idea when the text might change? It's not very good that the reporter is using this information from an outdated website to describe the illness when the whole point is that this is all supposed to be changing.

 

Paywalled Times article:

https://www.thetimes.co.uk/article/me-patients-wont-be-told-to-do-more-exercise-c0k39tp7n

ME patients won’t be told to do more exercise

Katie Gibbons
Friday October 29 2021, 12.01am BST, The Times
...

Treatments have included cognitive behavioural therapy, graded exercise therapy and medication to control pain, nausea and sleeping problems.

The new guideline says that ME/CFS is a complex condition where there is no “one size fits all” approach to managing symptoms. People should be given a personalised plan, led by the person living with ME/CFS with support from a healthcare professional, that can be applied to any type of activity, it says.

Baroness Finlay of Llandaff, a consultant in palliative medicine and vice-chairwoman of the guideline committee, said it had worked hard to “ensure care becomes more empathetic and focused on the individual’s needs”.

Professor Chris Ponting, of the Institute of Genetics and Molecular Medicine at Edinburgh University, said: “The guidelines will improve the lives of people with ME worldwide. They will improve awareness that graded exercise often makes symptoms worse.”

/END

 

Times, Guardian, BBC, but not NICE.
I managed to look and "see" it, when it wasn't there.

It's Schrodinger's publication.

 

And the SMC weighs in:

https://www.sciencemediacentre.org/...deline-on-diagnosis-and-management-of-me-cfs/

Somewhat more balanced than the selections of quotes that they've published previously on ME.

 

BBC quotes..

Dr Alastair Miller, an NHS consultant physician in acute medicine and infectious disease in North Cumbria, said exercise programmes could be helpful: "It is unfortunate that so much emphasis is given to working 'within current energy limits' rather than a gentle and controlled pushing of those limits.

"However, it is to be welcomed that clinics will still be able to provide appropriate personalised activity and exercise programmes for those patients in whom it is felt to be appropriate."

Already working on how to make folks exercise ‘for whom it is felt appropriate’, yuck

 

Guardian has "victory for campaigners" in the subhead.

Also this:

"Prof Peter White, emeritus professor of psychological medicine, at Queen Mary University of London, said: “Having looked after many patients with this illness I worry that this guideline seems to suggest that patients need to learn to live with CFS/ME, rather than be helped to recover from it.

“Nice have banned graded exercise therapy, in spite of it being found to be helpful in a major Cochrane systematic review, while recommending an energy management programme which involves ‘staying within your energy limits’, for which there is little evidence for it helping, and some evidence that it doesn’t.”"

(sorry originally posted too soon)

I guess we can't do anything, but they should change the subhead. The White quote is amazing. Disgraceful that they published this.

(Edit: BBC has same quote so it's all coordinated - so we have this and no guideline yet)

 

TBH, apart from the usual, and expected, suspects, even the SMC seems 'more' balanced than I would have expected.

Not that I have read in detail all of the submissions, once I got the gist, as soem, most, are too long for that.

I feel that the 'victory for campaigners' line/approach in the broadsheets is more damaging than the expected stuff on the SMC.

 

Prof Kevin McConway's contribution is longer than the guideline itself.

 

They are still publishing his rubbish when his arguments have already been found inadequate, plus the extensive files of GET harms?

 

Quick tabulation of Science Media Centre quotes:

1. Caroline Kingdon -- Supportive (obviously!)
2. Trudie Chalder -- Unsupportive and in denial ("guidelines...at odds with the research evidence")
3. Kevin Conway -- Accepting of the new guideline while focused on statistical minutiae regarding NICE process
4. Karl Morten -- Supportive ("transformative")
5. Peter White -- Unsupportive and also in denial (claims that GET is supported by research)
6. David Strain -- Supportive
7. Chris Ponting -- Supportive
8. Alastair Miller -- Unsupportive (again, obviously)

Fewer pro-BPS/PACE patsies than usual, and a surprising number of supportive comments. Is the SMC cleaning up its act?

https://www.sciencemediacentre.org/...deline-on-diagnosis-and-management-of-me-cfs/

 

I hope we are able to get some better coverage than this, or some corrections/amendments. I feel the coverage is fairly negative and gives a distorted picture of the illness and of what has happened, particularly in Guardian and BBC.

 

From SMC document

Prof Kevin McConway: “I am a Trustee of the SMC and a member of its Advisory Committee. My quote above is in my capacity as an independent professional statistician.”

edit: a surprising quote bearing in mind his position although he takes care to emphasise its independence.

 

Wow, frankly horrendous media coverage from what I can glean. So much space being given to the exact people who should now be rightly discredited and forced to crawl back into the holes from which they came.

it’s almost like the media doesn’t even attempt to determine the veracity of what is said about us. Just a collective shrug and determination that “well, this seems a wee bit complicated, let’s just have some quotes from each side and leave it there.”