What Primary Care Practitioners Need to Know about the New NICE Guideline for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults 2022

preprint

authors
Kingdon, C.C.; Lowe, A.; Shepherd, C.; Nacul, L.

Abstract
The new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), published in October 2021, makes significant changes in treatment recommendations. It acknowledges the complexity of this chronic medical condition, which always impacts quality of life and can be profoundly disabling, recognising the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test.

The guideline outlines steps for accurate diagnosis, recognising post-exertional malaise as a core symptom; importantly, ME/CFS can now be diagnosed after just 3 months in a bid to improve long-term health outcomes. It recommends the need for individual, tailored management by a multi-disciplinary team, ensuring that the wellbeing of the individual is paramount.

The guideline makes clear that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered as a treatment for ME/CFS and emphasises that cognitive behavioural therapy (CBT) should only be offered as a supportive intervention.

Because of the rigorous methodology required by NICE Committee review and the inclusion of the testimony of people with lived experience as committee members, this guideline will influence the future diagnosis and management of ME/CFS in the UK and beyond.

https://www.preprints.org/manuscript/202211.0016/v1

 

just looking thro this; two comments
The embedded links (presumably to the NICE guidelines) dont appear to work?

most importantly
Post-exertional malaise is mentioned several times but I can't see the actual definition as used in the guideline.
This leaves it wide open again to mis-interpretation, and interchanging with post exertional fatigue etc.

 

I'll raise the links issue with Caroline, who is coordinating on this (all the hard work is hers, really). I'm not sure why the links don't work (looks like an import thing), but I think it should be easy enough to fix. There are some formatting issues that suggest that is the problem.

I'm not sure that's quite correct. There is a brief description of PEM on page 4 in Box 2: "Post-exertional malaise after activity in which the worsening of symptoms:
− is delayed in onset by hours or days
− is disproportionate to the activity
− has a prolonged recovery time, lasting hours, days, weeks or longer..."

I realise that's not quite the same thing as giving the full NICE definition, but I think we are limited in word count and didn't want to merely copy the guideline (there are also legal and academic issues around copyright and plagiarism).

I will check what else can be done there, but reading our paper shouldn't replace reading the GL. I think, on its own, the description we have is fine, without also going into detail on every symptom (which will eat a lot of the word count).

We have covered GET, the problems with clinical trials, the reasons for not recommending things and the scope of survey evidence over the last decade.

I think the important things to mention re: PEM are the worsening of symptoms (i.e., not just fatigue), the fact it's a core symptom that must be present for diagnosis, and then the key features of the delay, the disproportionality and the prolonged recovery times. I think we've done that.

Also, at the very end we outline the process NICE used, including reaffirming that consensus was achieved on all recommendations in the NICE GL development process. Which was also important to reiterate.

 

It might need a little formatting cleanup before publication:

The link to the old guideline should probably be a citation?:

Also there are some points where it seems like bullet points are missing. I'm not sure if that's a good choice, a bad choice, or a problem with my PDF reader.

I think it's well-written and complete. It's a sciency version of a TL;DR (too long didn't read) of the NICE guideline.

 

I’m often surprised, then realise it’s my fault for not joining the dots, that most don’t understand that interrupting someone mid-PEM or crash from resting is very bad.

given their default of GET (where they think short term performance is ‘a good sign’ and miss the point) and a lifetime of being backpatted for hurting ourselves to perform on penalty of strips EDIT: no idea what this word was mean to be before autocorrect) from others I think this being a key way to cause long term deterioration needs to be underlined. And yes that includes that ‘little liberty’ of noise or ‘just this or that’ because of the wired but tired.

As well as it being stoically undertaken torture we do because the alternative will normally take more energy in the long run. No win of ‘so you can object but you can’t do’

anyway until this monumental penny drop of it being 2weeks to get over the appt - and that’s 2weeks of being ill (and you can be so ill you are resting so that your body will eventually rest), not a ‘bit under weather’ and if you don’t get full recovery from that it’s ‘rolling PEM’ they’ll still be fixated on judging our behaviour (calling it ‘symptoms’ but having no idea the two are often utterly different things).

probably worth spelling out the difference between functioning and performing too. Given the latter is what many of us have to do in order to access care that might help us one day to do the former

 

the problem is that the first symptom listed in Box 2 is
'debilitating fatigue'

so some might just jump to PEM = post-exertional fatigue.

if somehow you could just add that PEM is the worsening of some or all symptoms (see Box 2 and Box 3).

 

Honestly, I think that if people are lazy, adding more detail won't actually help.

I'll see if we can use your wording, though, because it's certainly clearer and removes the need to look elsewhere.

 

100% agree. These are deliberate manipulations of a term that was around for many years and they didn't do that to until they didn't get their own way on the guideline, now it is trying to warp that term (and a few other key ones) in order that the words we now need understood are also made ambiguous misdirects back to the same misunderstanding.

I sort of want the term fatigue completely banned - as it will force people to then look up what the condition is (rather than too many defaulting to seeing us like untenacious schoolkids saying 'we are too tired to' because that's what they've been sold). THAT term says 'push through' - that link has been pushed for so many years you can't rebrand it. It needs to be debilitating exhaustion that is made worse by moving exertion - ie the opposite.

It's the ratchet, quicksand effect of the condition that needs to be understood - if we can't avoid doing something in PEM it all gets even worse.Currently the default is the opposite and all the words need to change to emphasise this utter change in perception. ANYone trying to mess with the key terms is doing this with full knowledge deliberately, or doing it because they want to 'not learn' or are assuming and pretend 'the new is the same as the old'.

One of the most debilitating aspects of the condition is the removal of all words we need for our needs to be understood. It's very unkind, like someone having RA and joint pain, ache, sharp pain, agony type words getting warped into being understood as 'an itch', and any other word they might need to describe their symptoms or needs having the same done to it so when they say they can't move that day and their joints are getting worse all anyone hears is 'feeling overwhelmed and a bit uncomfortable [aren't we all]'.

This deliberate misdirect isn't funny or OK for people who have energy deficits, feel like they have an egg-timer when trying to communicate and are trying to convince those who are cynical of them to start with, it is toying with our disability in a cruel way - made even worse psychologically by all this coming from those who basically instigated an abusive narrative of the condition for so long, or those who want to 'reframe' our condition to something that isn't really an issue and certainly isn't a disability (ratchet) to the extent it is but something to be 'gotten used to' (willpower will push you through).

I get frustrated there isn't enough stamping down hard on the basics - it seems already the CBT has gone from 'if you had other issues alongside ME' (what is it in the guideline for) to now wording that infers it is treatment, which has led to the NHS saying 'it's the only treatment'. Just walked right over so what's the point in fighting to get it right in the first place.

 

So I believe this paper has been accepted for publication now, and there should be more info forthcoming. We made changes based on the feedback here, so thanks for that! We were still very limited by wordcount and scope, but I think it's got some relevant additions in it now.

 

That’s one of the reasons why I preferred “systemic exertion intolerance disease” to “chronic fatigue syndrome” and I thought ME/SEID would have been an improvement on ME/CFS.

 

I couldn't find a separate thread so I presume that the published paper isn't being discussed elsewhere.

Free full text:
https://www.mdpi.com/2227-9032/10/12/2438

What Primary Care Practitioners Need to Know about the New NICE Guideline for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults
by
Caroline Kingdon 1,*,Adam Lowe 2, Charles Shepherd 3 and Luis Nacul 1,4


1
CureME, Clinical Research Department, London School of Hygiene and Tropical Medicine, London WC1E 7HT, UK
2
Centre for New Writing in the School of Arts, Languages and Cultures, University of Manchester, Oxford Rd, Manchester M13 9PL, UK
3
Myalgic Encephalomyelitis Association (MEA), 7 Apollo Office Court, Buckingham MK18 4DF, UK
4
B.C. Women’s Hospital & Health Centre, Complex Diseases Program, Vancouver, BC V6H 3N1, Canada

* Author to whom correspondence should be addressed.

Healthcare 2022, 10(12), 2438; https://doi.org/10.3390/healthcare10122438
Received: 19 October 2022 / Revised: 29 November 2022 / Accepted: 30 November 2022 / Published: 2 December 2022

(This article belongs to the Collection Why Some Patients Never Fully Recover: Post Active Phase of Infection Syndromes (PAPIS))

Download Review Reports Versions Notes


Abstract

The new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), published in October 2021, makes significant changes in treatment recommendations.

It acknowledges the complexity of this chronic medical condition, which always impacts quality of life and can be profoundly disabling, recognising the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test.

The guideline outlines steps for accurate diagnosis, recognising post-exertional malaise as a core symptom; importantly, ME/CFS can now be diagnosed after just 3 months in a bid to improve long-term health outcomes.

It recommends the need for individual, tailored management by a multi-disciplinary team, ensuring that the wellbeing of the individual is paramount.

The guideline makes clear that any programme based on fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (GET), should not be offered as a treatment for ME/CFS and emphasises that cognitive behavioural therapy (CBT) should only be offered as a supportive intervention.

Because of the rigorous methodology required by NICE Committee review and the inclusion of the testimony of people with lived experience as committee members, this guideline will influence the future diagnosis and management of ME/CFS in the UK and beyond.

Keywords:
ME/CFS; ME; understanding; diagnosis; management; disabling; stigma

Twitter thread where I plan to post quite a number of extracts