NICE ME/CFS guideline - draft published for consultation - 10th November 2020

Here's the link to the draft guideline and associated documents:

Draft guideline document
https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline

Also

• Evidence review A - Information for people with ME/ CFS
• Evidence review B - Information for health and social care professionals
• Evidence review C - Access to care
• Evidence review D - Diagnosis
• Evidence review E - Strategies pre-diagnosis
• Evidence review F - Pharmacological management
• Evidence review G - Non pharmacological management
• Evidence review H – Non pharma management appendices
• Evidence review I – Multidisciplinary care
• Evidence review J - Review of care
• Supporting documentation - Children and Young people
• Supporting documentation - People with severe ME/ CFS
• Supporting documentation - Expert testimonies

This thread is for general responses to the draft.

Here's a link to the discussion prior to the release of the draft guideline:
NICE ME/CFS draft guideline - publication dates and delays 2020

 

This post will link threads for members to discuss sections of the guideline in preparation for the S4ME submission.

Section 1.1 Principles of care for people with ME/CFS
pages 4-8

Sections 1.2 Suspecting ME/CFS; 1.3 Advice for people with suspected ME/CFS; 1.4 Diagnosis
pages 8-11

Section 1.5 Assessment and care planning by a specialist ME/CFS team
pages 11-13

Section 1.6 Information and support
pages 13-16

Section 1.7 Safeguarding
page 16

Section 1.8 Access to Care
pages 17-21

Section 1.9 Supporting people with ME/CFS in work, education and training
pages 21-22

Section 1.10 Multidisciplinary care
pages 22-4

Section 1.11 Managing ME/CFS Part 1 - Energy Mgmt; Physical Mtce; Physical Activity

Section 1.11 Managing ME/CFS Part 2 - Symptom Management

Section 1.11 Managing ME/CFS Part 3 - Psychological support

pages 24 - 36

Section 1.12 Managing coexisting conditions
pages 36-7

Section 1.13 Managing flares and relapses
pages 37-9

Section 1.14 Review
page 39

Section 1.15 Training for health and social care professionals
page 40

Terms used in this guideline
pages 41-5

Recommendations for research
pages 45-7

Rationale and Impact
pages 47 - 71

Evidence reviews and supporting documentation
Separate documents - see links in above post.

Apologies - this section was omitted when the threads were created:
Context
pages 71-2

A reminder to anyone interested in adding comments to these discussion threads - the threads will be closed this Friday (27th November). After that you will have to wait until the draft submission is ready a couple of weeks later to have your final say. For details, see this announcement.
https://www.s4me.info/threads/nice-draft-guideline-submission.17855/

 

Trish here. I have been drafting the summary for the weekly News in Brief and thought this list of links to documents and responses so far might be useful. They have all been posted on this thread:

Draft Guideline here
NICE consultation page (including links to Evidence Reviews and Supporting Documentation and how to respond) here
Statement from NICE here

Professor Jonathan Edwards and Dr Nina Muirhead Expert Testimony here
Summary of the guideline by Michiel Tack here

ME Association here MEActionUK here Invest in ME here
Action for ME article here survey here

Trial by Error by David Tuller here The Science Bit by Brian Hughes here
Centre for Welfare Reform here Science Media Centre here

The Guardian here The Times linked here The Telegraph here
Medscape here British Medical Journal here The Pharmaceutical Journal here
_______________

Added since 14th November:
BMJ rapid responses here (including from @Andy and @Robert 1973)

Last updated 16th Nov.

For more, see the latest week's News in Brief.

 

It's three minutes past midnight, and I can't see the draft yet: https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents

Does this mean that I will not have an excuse for not doing some washing up tonight?

 

Also

 

First is A4ME

Second is MEAction

I have not read the docs and must sleep, but looks like seeds of good news.

Devil will be in the detail

 

Looks like the documents are here now: https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/consultation/html-content-2

 

From

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

Prof Peter White, Emeritus Professor of Psychological Medicine, Queen Mary University of London, said:

Genuine thanks to everyone who fought to make this happen.

Usually not the gloating type, but ahhhhh feels so good to see Peter White cry as he watches his legacy go up in smoke.

 

I’m near tears with relief and happiness. I can’t read it all yet but just read this part of severe ME (sorry it’s coming up strange when I copy and paste):

“Be aware that people with severe or very severe ME/CFS may experience some of the following symptoms that significantly affect their emotional wellbeing, communication, mobility and ability to interact with others and care for themselves:

• severe and constant pain, which can have muscular, arthralgic or neuropathic features
• hypersensitivity to light, noise, touch, movement, temperature extremes and smells
• extreme weakness, with severely reduced movement
• reduced ability or inability to speak or swallow
• cognitive difficulties, causing a limited ability to communicate and take
in written or verbal communication
• sleep disturbance such as unrefreshing sleep, hypersomnia, altered
sleep pattern
• gastrointestinal difficulties such as nausea, incontinence, constipation
and bloating
• neurological symptoms such as double vision and other visual
disorders, dizziness
• postural orthostatic tachycardia syndrome (POTS) and postural
hypotension.
Recognise that symptoms of severe or very severe ME/CFS may mean that people:
DRAFT FOR CONSULTATION
1 • 2
3
4 • 5
discussing and regularly reviewing with the child or young person how they want to be involved in decisions about their care (taking into account that their parents or carers may act as advocate)
taking into account that children and young people may find it difficult to describe their symptoms and may need their parents or carers to help them.
6
7 Awareness of severe or very severe ME/CFS

need a low-stimulus environment, for example a dark quiet room with interaction at a level of their choice (this may be little or no social interaction)

are housebound or bed-bound and may need support with all activities of daily living
need careful physical contact when supported with activities of daily living, taking into account possible sensitivity to touch
need aids such as wheelchairs
cannot communicate without support and may need someone else they have chosen to be their advocate and communicate for them
are unable to eat and digest food easily and may need support with hydration and nutrition (see the section on dietary management and strategies)
have problems accessing information, for example because of difficulty with screens, noise and light sensitivity, headaches affecting their ability to read, or brain fog affecting their concentration.

Personal care and support for people with severe or very severe ME/CFS should be carried out by health and social care practitioners who are:
• known to the person and their family members or carers wherever possible
• aware of the person’s needs.
Risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks to the person (for example, worsening their symptoms). For people with very severe ME/CFS, think about discussing this with the person’s family or carer on their behalf.”

Thank you so much to everyone who was involved in this. It’s got everything that I desperately was fighting for when trying to access hospital care, but couldn’t get. It explains so many symptoms of severe ME that are disbelieved, and the accommodations that I need.

thank you

 

I wouldn't jump to triumphalism. Wessely's comments at the SMC seem to indicate that he thinks that little need change. A lot depends on the details and how those details are likely to be implemented by those running services. Looks as if there's a lot to read!

 

Their entire strategy has always been lying through their teeth to save their own careers. It's all they care about. They already pretended that they never told patients to push themselves in the PACE trial, when that literally contradicts the entire point of CBT and GET in the trial (as well as having the pacing group as a sort pseudo control grp) . Whatever direction the wind blows they will follow, if it benefits their careers, reputation or financial situation.

White just couldn't hide his bitterness and disdain like the rest of them, he was simply too proud and in some weird way I respect him for it.

 

I wonder whether the ME Association or the other charities got anything in advance as clearly the five experts quoted by the Science Media Centre did.
This was posted at 8:33 PM:

 

OT: I was just mentioning a premature victory lap from the 90s, where over-excitement and over-interpretation about a draft DWP decision to class ME as a neurological condition for the sake of welfare claims led to a concerted push-back by Wessely and others, and then decades of problems. You get a sense of this from page 21 (then in reverse order back to page 1) here: https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf

Maybe I've just been burnt too many times, but I'm drawn to staying cautious about things.

 

Seems like they’re jumping the gun. GET isn’t scrapped. The guidelines say that unstructured or general exercise programs, or exercise programs based on fixed increments aren’t recommended, and they use GET as an example of an exercise therapy which uses fixed increments. So programs with fixed increments are bad, but tailored exercise (which most GET programs are anyway) is fine.

The description of exercise therapy sounds like any standard GET program: establish a baseline and then slowly increase exercise, but they do mention the energy envelope and the need to stay within it. And they say that patients should be informed of the possible risks and benefits of exercise, without explaining what they are, and say that some people get worse, some find no benefit and some do benefit from exercise.

The bit about managing relapses seems to suggest that relapses are to be expected and aren’t a reason to stop the treatment. At least the old trope about symptom exacerbation being a normal part of reconditioning is gone, but there’s no mention of stopping treatment if the patient gets worse either.

Given they say that exercise should not be recommended based on deconditioning, it’s unclear what the recommendation for exercise is based on? What rationale do the guidelines offer for why people whose core symptom is exertion intolerance should be undertaking exercise as a therapy, now that deconditioning has been discredited?

 

This is an historic draft. Its really really good for ME-patients. Buzzing.

 

The committee on why they wont support GET