Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

Appraisal of Clinical Practice Guideline: National Institute for Health and Care Excellence NICE clinical practice guideline for myalgic encephalomyelitis or encephalopathy/chronic fatigue syndrome: diagnosis and management
Sarah F Tyson

Commentary. No abstract.

Link | PDF (Journal of Physiotherapy)

 

Don't call us, we'll call you.

*edit* in reaction to Gatchaman's latest quote.

 

"This acknowledged the ‘patient’s voice’, which had been highlighting the harm done by these treatments for many years."

Just so long as you don't judge the 'patient voice' in this way, I guess.

 

"This acknowledged the ‘patient’s voice’, which had been highlighting the harm done by these treatments for many years."

Except that it didn't. It just looked at the quality of evidence in the normal way.


"The guideline committee had strong representation from people with lived experience of ME/CFS (both lay and professional representatives) and sought to integrate people’s lived experience by including evidence from qualitative research within best-evidence reviews."

Except that it didn't. The decision on treatment recommendation was based on standard assessment of formal studies. Evidence of harm was taken as relevant but it came from studies with numbers, not 'qualitative research'.

No way should the NICE guideline be used as a reason to support 'qualitative research'.

"NICE’s guidance, policies and processes were meticulously followed and closely scrutinised at every stage, as the content was considered controversial by those who were reluctant to accept that ME/CFS was not psychosomatic."


Yes, they were, as usual (bar some past occasions when they fell below their usual standards!). But that was not because the content was controversial, it was despite it being controversial if you like.

"This guideline has been welcomed by people with ME/CFS, ‘patient’ organisations and most clinicians and services."

Except that three Royal Colleges threw up their hands in horror at it. And many of the people supposed to be expert service providers keep writing papers saying how awful it is.


Cheerleading for the Guideline is no bad thing but it would be nice if it wasn't used to slip in things like qualitative research. Unreliable research was the whole problem in the first place.

 

Unless
the person feels ready to progress?

I find the idea people think these things and say them in such a way so weird

what do others think is the correct term on this ‘issue’?

the idea there will be patients who ‘need help to progrsss’ ? Does this exist?

I suspect it shows people who still want to cuddle their delusions sneaking in more ‘compromise language’ as if laws can be eluded by translating with a thesaurus.

just like their delusions we all know still most of them believe that ‘there’s still some with CFS who still love what they do’

 

To give more context to "unless the person feels ready to progress":

So I think it may be more about helping keep the brakes on for people who feel they are recovering. Obviously some people do recover and some even get back to high-level athletic pursuits. Is there a way to optimise and protect recovery in those that are recovering? I don't think we can answer that until we know more about mechanisms.

Perhaps in the future we'll be able to track things like urinary metabolomics to identify PEM threshold and exercise within limits where we could conceivably get benefits of exercise without the downsides. Again: for people who seem to be on a recovery trajectory.

 

Here is the thing. I was one of those who probably still deep down doesn't want to think that it is just about never exercising again. And who as someone who was pretty athletic before never just cut it out, and would certainly be happy to add bits in. There were big differences between when my life was controlled by others/events/commitments/survival and I got much more ill much faster - even if it was just work meaning you couldn't rest as your body needed - and when it wasn't.

You do eventually get ill enough, and boy did they do a good job of ensuring we are the least 'helped' to the point where propaganda has metaphorically encouraged laypersons to metaphorically be putting their foot out to trip us up 'in the name of helping us, cos you know we need that', that the deliberate non-access to any adjustments then does this for you. You can't access life without it being over your threshold. ANd of course the bad guidelines and bad propaganda I know incited employers etc to do things that accelerate that progression to that point - by the attitude of 'they don't need to step back, they need to be toyed with and have their physical buttons pushed' that the cfs-CBT encouraged.

I was reminded of this by @Maat 's very good post. People get double-whammied (but it is actually more than that because new norms got spread)

So it is slightly tricky to put this sort of stuff into context, when it is from the same people who aren't first lobbying to stop others from gerrymandering to ensure the people who need the most control over their exertion and life are instead interfered with to make that impossible. Because that means it is a very rare indeed situation where someone could even be having some nice calm life where they can 'just' add in 'a bit of whatever'.


And a few things I do know from over the years trying 'this' in different ways:

1. you need a LOT more rest AS YOU NEED IT if you are adding in physical stuff. SO they need to start dropping this still ongoing nonsense of sleep hygiene that was always made up based on old wives tale level knowledge. And I believe their concept of 'pacing' is the same patronising but foolish ignorant people assuming they can just talk to intelligent adults like they are 'their kids who just need patronising' and not people who they need to hear about the actual illness instead of treating them - yes, like it's behavioural (but these people don't understand their mindset even is behavioural because they don't 'get' that term and 'think' their 'ideas' are 'science', just like they don't 'get' that when people say 'psychosomatic' they are talking about them, because they don't realise what they think is psychosomatic).

EDIT to explain: In ME exercise will affect sleep needs in completely different ways to their kids when they get over-tired or 'other people who need a routine'. There will be compromises and 'exercise' won't make their 'behaviour and life' more normal (which seems to be the fallacy car-before horse issue we deal with here where they think act normal--> feel better, rather than other way around).

2. you will think, and certainly I think most physios and GPs will be fooled into thinking it is 'all great' - particularly because those who do this will be the very people who love exercise and so will be sooo happy that whatever fudges they are shifting to add it in 'they are back on their way'. BUT it will hit at 6-12months. That's why ME is so dangerous. And I'm not sure that 'managing PEM' is all that possible to avoid that stuff. EDIT: you can think you've 'managed it' but still get the deterioration.

3. the combination of these 2 things creates a very dangerous situation. Because I've learned that professionals don't like to look wrong - above anything. EDIT: and the culture can make just saying 'it didn't work' an issue that affects their job for the worse rather than better.

And they will have been inadvertently misled by the patient. They will almost be unable to see/process/hear when someone goes downhill, so have to use terms like 'flare' as if it was something they did or caught at 6months, rather than it being a slow accumulation. I just cannot see them being able to be 'good objective observers'. And part of it isn't their fault, because you need to know and listen and be open-minded and experienced to be able to see this and look past what might look lovely at 3months as if they built muscle to realise that was the same process that meant they lost function at 12months.

EDIT: You start seeing the same misattribution errors and grabbing for 'it's something they did' excuses like: 'it's because they aren't sleeping at the right times' instead of realising the sleep going awry is/was a symptom but also a vital healing mechanism

4. SO the fact I'm still seeing 'professionals helping' instead of 'professionals objectively listening and studying to build knowledge and work with' is just a worrying repetition of the same fundamental error.

It's why it felt like such a step forward when Workwell research came out. Ironically I - stupid as I am - had tried going to a gym around that point, and a personal trainer had been one of the first ones telling me about how he worked with a few with the same condition and you had to be really careful etc. SO it seems in exercise science there are different techniques that at least some use that means they are always learning.

 

I guess I just feel that this paper could have been an appeal for attitude-change. A rousing call to action for people to begin realising this could be an interesting area for them to develop science, instead of the same old 'patients just need our advice'. Based on the fact that: we aren't there yet on full knowledge. And it isn't just an attitude-issue of patients that they just 'need to be helped to pace'. Developing that knowledge would mean people would do that. NOT 'being told' EDI: generic norms where there are gaps as 'trying to help' , that's the kicker of the condition is that those aren't helpful and most will have tried that - so there also needs to be a call to action on 'inadvertent blagging' by realising when you don't know for sure (and are just calling on your own assumptions inadvertently).

Physio in other areas works because they know what they are talking about, and they are passing on facts and why it works. Why does ME still get mothers-attitude laypersons ideas passed on as if we just need coaching?

Don't these people want an area to be 'growth-minded' at last, instead of what I find strange which is to train in physio but want to pretend you know about psychology. They haven't studied and learned to think critically in psychology so what are they doing 'it' [what they think is psychology but isn't, its actually generally behavioural manipulation/communication techniques without a good basis under them ie 'aping' without the science that the 'what and why' works] for?

EDIT: I mention this line because phrases like 'those who want to progress' are so loaded, this can only be that same issue of not realising that the 'CBT-communication-style' is something that has been programmed onto them, rather than something they can step free of. I know it is an issue of 'buzzwords' in a sector, but it is a 'motivational/persuasion communication tool' and not 'psychology' when just used to infer 'x is right, y is wrong' by using behavioural psychology ie reward-punishment techniques in communication. ie it is used by sales and other areas not to 'do the right thing' but to 'persuade things the way you want'. Rather than eg real psychology which is what Workwell did with the marathon runner where she did what she would do anyway and they just offered to measure her afterwards to show if she'd got fitter.

TO put it simply I'm disturbed by the 'sureness' in place of where there should be 'calls for curiosity and science'. It smacks of: 'these are people who need to be managed' and 'our guesses are better than nothing'. Instead of 'we need to learn about the condition so we can help individuals manage to survive/live and have what they need, and to do this we need to work with and listen to those who provide the feedback that is the measure of consequences long and short term of these things'. Such a different approach here to @PhysiosforME ?

And I'm well aware that it's tricky given the context, but I guess that is the issue. How can you write this sort of thing whilst keeping the elephant in the room untouched 'to keep the old school happy' and tip toe around everything.

I almost feel for the writer here and do really have to ask - in order that I can really contextualise what this being released means:

- who is the specific audience that is having to be written to this way, with fops to fables to 'keep them onside'?

- is this a sign that there a culture issue/bigger 'spirit' problem (or skills when we talk critical thinking and becoming 'growth-minded' instead of one-way instructive) we need to discuss about this audience first in order for things to progress ?

 

'should not be offered exercise-based treatments, unless the person feels ready to progress. If so, exercise should be overseen by a specialist ME/CFS physiotherapist and include regular review, information about the potential risks, how to recognise and manage a flare-up, and very careful flexible adjustments to activity levels within the individual’s energy limits.'

I think we need to be honest about this not being justifiable and something that should be actively rejected.

If there are risks to exercising then 'feeling ready to progress' is irrelevant. You cannot have it both ways.

The reality is that there is no evidence that supervised exercise is ever beneficial for people recovering. We simply do not know if there is any benefit at all and we have good evidence for it being a bad idea if it is based on the patient 'feeling ready'.

My own n=1 about three times - once after EBV and twice after Covid - is that when you are genuinely ready to do what you like you do not need to do any exercises. You just gradually do more if you are enjoying it and slow up a bit if you are still getting some payback. There is no law that says people have to exercise. The evidence recently is that the most important thing is to try to keep to a near optimum weight and do maybe 2-3000 steps a day, which most people do just round the house. 10,000 steps a day is probably better but that can be done with a gentle ramble without 'exercise therapy'. If you want to get back to marathon running that may be fun for some but the injuries are probably worse than the health benefits.


It is really all about clinging on to the idea that you need physios to 'help' people recover with careful supervision, when in fact physios have absolutely no evidence base on this except in the context of high-level sports training with ergometers and stop watches - which have nothing whatever to do with being healthy.

 

Absolutely right. When improving from any illness, people will simply instinctively start trying to do a bit more and if that goes OK, a bit more, and so on. No need for multidisciplinary teams, special customised physiotherapy programmes, encouragement by therapists/psychologists/life coaches/whatever, etc.

THIS, times a million.

 

It's Kafkaesque.
I have no doubt that there are physios and OTs who would have a role in adapting to capacity ( reigning people in ) , supporting those who may have comorbidities which, if recovering , may benefit from assessment and monitoring. But where ?

From patients surveys and the leopard changing spots from BACME before and after the NICE guidelines process how do people have confidence that mindsets have moved , that anything has changed?
From discussions there is still a lack of understanding re fatigability and PEM at professional levels.
Paediatrics have a version of Activity Management being pushed which is a rebranded GET .

It's still a classic double bind situation .
Until wholesale medical education catches up it seems it remains so.

ETA spelling

 

100%. I get the point about political compromise but that aspect of the new NICE guideline has deeply troubled me from the start and I think it has ended up harming us. It’s allowed existing services to continue to exist when they should be completely dismantled. And it’s allowed for GET to be rebranded as activity management.

 

So PWME find themselves in the position we hypothesised about on PR ten years ago. Do you keep some services running just so that there is something, or do you scrap the lot. There were differing views then and the dilemma remains.

 

I want to see ME specialist nurses trained instead of all these practitioners.

Nurses can be as ill-informed, badly trained, and dismissive as anyone else, obviously, but it's partly about status and respect. Developing a nursing specialism shows a different kind of intent to sending miscellaneous therapists on 6-week courses, and and it might also root ME more firmly within hospital services instead of being relegated to the clinical backwoods.

 

Scotland had 1 specialist nurse who was really good. He really understood the issues .
I don't think there's a new one yet .