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

It sounds like a good start—but one nurse, for a whole country. It's not enough for one city.

 

And @Trish Im a bit divided on this. I absolutely agree that those just wanting to plonk the same orthodoxy on it all need shifting out completely. It’s all smelling so so old fashioned and unfixable the way they are unable to hear or respect.

On the other hand @PhysiosforME habe been transformative in changing things for the better - I think it’s easy to underestimate how important they have been. Even when I know this every so often I’m re reminded of quite what an important role they have had in changing things from where they were and giving our words respect and knowing how to approach getting these things demonstrated and asking questions that are useful for the community.

so I think you couldn’t get two more different things than @PhysiosforME and perhaps we need a new group for forward-looking OTs who want to help with info and advice for adjustments etc vs this old school ‘think they own the area and it’s their job rather than people’ who in the last few years just seem to at each moment of truth often be increasingly worse at showing us how their personal qualities and skills are oppositely suited to what is needed and don’t get what they want to offer isn’t useful or wanted. We aren’t their payday or whatever the right term is and I don’t think their relationship with us and reason for being involved with the condition is healthy.

 

Absolutely! But one of the really important things they've done is to avoid starting from the assumption that a physio can actually help someone with ME. Obviously individuals sometimes develop problems or injuries in addition to their ME, and the Physios for ME guide for treating them is great. In an ideal world an ME clinic would have access to a knowledgable physio, but I don't see why you'd have a physio seeing everyone.

OTs might be a bit different. I've seen two different sorts—several local authority-employed ones who assessed me for aids and adaptations, and another who looked at my workspace and the way my job was structured in order to reduce the amount of physical activity I needed to do.

All of them knew about ME, and the one we engaged under the Access to Work grant seemed to know as much as I did. If I were setting up a clinic I'd happily employ any of those individuals; I know I was lucky, but it showed that knowledgeable people do exist. I can see a role for them with some patients, partly to offer advice about making people's homes as accessible as possible (small things like a shower chair and a raised loo seat can make the world of difference), but also as advocates for people who're still working. It was amazing how easily common sense changes could be made following a firmly-worded report from an OT, when some of the same things were refused as impractical when requested by me.

 

No indeed. Which sort of should make things more fixable. I note you posted in the MEA PROMS research and agree that it is important that we all perhaps are pushed to take some time to look at that one afresh, because it is one of the things that will directly affect treatment EDIT: most imminently and most directly that we have going on currently too. But it feels like there are a few of these things that come together to form a bigger picture.

Sorry if the rest of this is kind of top-of-the-head thoughts but it is kind of an important puzzle to think how it can be well elucidated as an issue and moved forward.

I think I was making the point that should those who are part of the set-up be mis-thinking it is about something else (EDIT: 'like bias against physios' or something silly), there has been sadly enough from them now and enough time for them to demonstrate the issue does seem to be caused by something more persistent. And that they aren't capable of growing enough/aren't suitable/can't or won't fix their thinking problems/approach and be able to change the set up to what is needed for whatever reason(s) - which I'd be intrigued to know more about. But maybe there is a reason why they seem to almost begin with the wrong things/ have a natural 'go to' approach of seeing it as a different type of problem.

In essence I guess if the side that is more able to think like physios for ME hadn't existed then could there really have been any call for them to have any place at all, given what they'd offered hadn't been helpful and they had nothing else in their bag - the specific individuals. And agree on the compromise side but I guess even those lobbying had to point to something better than 'keep their jobs' in order for such a request to even make sense that there was potential of usefulness or them developing real expertise one day etc.

I guess what I'm saying is that you aren't really an ME expert anymore (as per noted in the guideline being the justifcation) if you aren't up to speed with that new knowledge vs in 2021 and haven't made efforts to engage in that knowledge-base and learning by reading it rather than just writing your own objections/version? It wasn't a debate by that point, so why are they still now stuck thinking it is jsut because a few of them spread a weak rumour pretending 'oh it was just the patients' which should have been a red flag in itself as a reaction but years on now isn't even just them going through the phase of denial and then getting on with it?

But then it is all being distracted from by working on different infrastructure-based things?

I'm still flummoxed a bit that those individuals haven't taken the knowledge developed by workwell and physios for ME - as you'd find with other sectors when people claim learning and best practice - and embedded it into their knowledge. It isn't like they are 'the experts' in that part if they are the 'doers/implementers' - I mean they can write a paper or two as an after case study to post-hoc justify what they deliver but that isn't the same as being research-led or even informed by it.

 

I agree. And reading it I find the order in which the sentences were composed into that paragraph insightful. I don't understand why the lines I have placed in bold - which relate to 'patient voice' - were placed where they were.

They may have had a place as an important relevance as an 'and also' if they were at the end of the paragraph. I feel that it was a deliberate choice not to begin with emphasising the rigorous nature of the evidence review, and that Nice's policies and processes were meticulously followed - and to instead dot this within it, when it wasn't 'part of the methodology'.

I also know that if I am aware the author must be well-aware that the immediate reaction from some to the guideline was to start what was a rumour of no basis in the Dec following the guideline 'that it only changed because of patient's complaining'. This was begun to undermine its implementation and to ensure it was taken less seriously.

So why for something calling for it to be implemented and taken seriously would such a divisive fable not either be tackled head-on or the other alternative the methods underlined as the key point, and the note regarding 'this was the extent of the patient voice and it is important' be the second message to quell such stuff?

I flag that simply because it becomes inaccurate in its spirit of message when put in the order it has been put in, particularly given the context all would know it has been written in?

"This acknowledged the ‘patient’s voice’, which had been highlighting the harm done by these treatments for many years. The recommendations in the guidelines were drawn from 10 evidence reviews, which downgraded the quality of most trial evidence that had been the foundation of previous guidance. 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. 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. To better understand the needs of two particularly underserviced groups, NICE commissioned studies to examine the experiences of children and young people with ME/CFS, and people with severe/ very severe ME/CFS when seeking healthcare. This supplemented the limited evidence in these areas. NICE also took three expert testimonials to better understand specific issues and led extensive stakeholder consultations."

 

@Trish and many others

And yes, we do seem to have an issue that is well-encapsulated in the reading of this paragraph. Ironically the sentence that I have boldened seems to present the 'divide'

"It covers multidisciplinary, person-centred care involving: family/carers; joint decision-making; effective communication; diagnosis and assessment; provision of a support plan; self-management; managing comorbidities and illness fluctuations; long-term support and review; educational and vocational support; and the need for a skilled and knowledgeable workforce. The most important and relevant change for physiotherapists is rejection of the notion that ME/CFS is caused by deconditioning, ‘dysfunctional illness beliefs’ or ‘exercise avoidance’. Specifically, the guidelines state that people with ME/CFS 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 do not fully get why a line that begins with 'the most important and relevant change for physiotherapists' would be put in the middle of a paragraph given the well-known primacy and recency effect.

I'd be interested on your thoughts on the first line. I haven't thought enough to see whether I have a problem with this list as a new job description??

it seems to assume 'diagnosis' and 'self-management' for example..


I do think that it is a shame that there wasn't a dropped line in order that the boldened sentence was the beginning of the next paragraph. I also don't get why there are twice as many words focused on the 'one day maybe' part rather than the nub of the issue and guideline. Surely the 'business end' of the job should now be not that at all?

And I find that this could be read [by those wanting to read it that way] as if the last two lines are the 'delivery' of the bold line. When it is actually in my mind the little added extra that maybe won't ever be required.

I do know that it feels that BACME have indeed often seemed to focus on the last two sentences over the substance of what the guideline is now requiring them to focus on. And the fact that this is the line where the phrase 'specialist ME/CFS physiotherapist' comes in is interesting.


The right line that needed to come after that first line would be: how do we develop this knowledge that we need for all of these things properly and isn't the old stuff we thought it was?

It wasn't to 'tweak' the old stuff

Because the first thing that was required of BACME was for them to understand that the boldened line meant that they had false beliefs if they believed those things and that anyone needed 'psych' anything (except it isn't real psych is it, it's their own home-made version which isn't therefore psychology in the proper sense but weaponising inferences of it) embedded into what they do and start being straightforward. Person-centred is active listening and leading the design, not cod pretend 'psychology'


And by now I do think that by now that message needs to be straightforward and clear: anyone who hasn't updated their 'overall' needs to get with the programme. It means filling the gaps on proper research-led material for the main bit of the job. And if there are issues preventing this (like who is running the clinic) then these need to be aired and discussed as issues.


The writer isn't responsible for this of course, and there are some good messages in there, so it must be hard having your words dissected to this extent. But when something is that short and the audience has had such misinformation then it does need to be borne in mind as part of the communications need/task etc.

I just think that every good piece about the guideline in physio needs to be underlining that penny-drop and if the gist taken from it is wrong and someone is just doing their added-extras without the underlying message being correct they need to realise they aren't doing the job correctly.

 

NICE has told me in correspondence that they can only advise, not instruct Doctors and that ‘changing Clinical Practice is one of the most challenging parts of our role’.

The GMC have also told me in correspondence that:

‘They would not want to reach the situation where medical Doctors are prevented or dissuaded from research projects in the future for fear of regulatory action. Any professional undertaking research should do so under the umbrella of the research bodies set up for this purpose, to ensure that any research work is carried out within the parameters set out by the particular organisations overseeing it for example an academic or specific medical research body.’

So in my view, any effective Regulation of medical science and clinical practice with regard to ME is effectively disappeared down the gaps created by institutionalised buck passing and narrow self interpretation by specific Regulatory authorities of their regulatory remit.

Our joint advocacy has after years of effort (35 or more in my case) at least managed to get some realism into describing ME as the primary biological illness it undoubtedly is. This should have relegated the BPS approach to the supposed side lines, but it has not not stopped their clinical or research activities or importantly stopped vulnerable (new and existing) patients unwittingly engaging with and being harmed by their failed science and treatments.

Patients and their carers by and large trust their Doctors and therapists but if as with ME, Doctors and therapists are resistant to changing their clinical culture, and ignore NICE guidelines, being an informed Patient is your only defence and safeguard.

The information contained in your threads helped me and my family safeguard ourselves as much as is possible within this regulatory failure surrounding the clinical practice dominant in ME.

Here are examples of some of the questions your posts have answered for me as a nonscientist and helped me make sense of the science and clinical approach around ME by setting out which is of good quality, which is poor to harmful and even just nonsense:

What makes good science?

What is good research design and practice? And What is not?

What is good Ethics in Medical Science and Treatment?

What constitutes meaningful results and what are the difficulties with results based on non-objective but subjective measurement/interpretation?

What information is required to satisfy the ethical condition of gaining patients informed consent to being research subjects/participants?

What constitutes good regulatory and ethical standards in the conducting, reporting and publishing of results in Science Journals and the Media?

What is the difference between speculative analysis around research findings demonstrating differential outcomes in patients and controls under test conditions and definitive statistical probabilities being found?

When do repeated negative or non findings become sufficient to determine the high probability of the non-applicability of a speculative analysis/theory?


These are illustrative examples of the types of questions I have asked myself and to which I have found very helpful information in your comments. There are many other of my personal questions about the science in ME you have helped me with.

You could argue that NICE have already synthesised this, but if your doctor and the dominant clinical culture ignores NICE then the ME Charities and other Advocates might help fill the regulatory gap by making the issues crystal clear so as to empower the patients in their choice of clinical care.

My question is could we, together, try to synthesise the very helpful information/comments contained in this knowledge base which is S4ME into an information sheet or series of sheets which could help patients identify and choose good science practice and good clinical practice with regards to ME?

Patients are still the primary customer of health services whether paying through insurers or privately for the service. Their trust as patients/customers should not be abused but the dilemma highlighted above in Jo’s post demonstrates that it most definitely is the case in the clinical care offered to ME patients by existing health services.

 

I wouldn't want to see that either. I just want it to meet the basic criteria for scientific research.

It will be interesting to see whether research co-production becomes mainstream. I'm hoping more funders will make meaningful patient participation a condition of grant, especially for major projects—this should improve the overall quality of research, especially where scientists see it for the opportunity it is rather than an inconvenience.

It's an interesting thought, but I wonder if it might be more effective and empowering to encourage people to ask some of the questions you mentioned, rather than to supply answers?

I've been on what sounds like a similar journey to yours over the years. I began with little idea how to challenge scientific research, as I didn't really understand how it works, what it is, and what it isn't. But what I've gained from that learning process isn't about answers at all, it's about asking questions.

 

Exactly.

I think that whether there are clinics that are ME-specific or some sort of other format (that provides a conduit to EDIT: and brings up to speed, local services like social services and GPs and hospitals) the Physios for ME information was transformative because it simply and straightforwardly describes some of the penny-drops that seem counter-intuitive to some. Because of the position we'd been put in then having that laid out in a way it is hard to argue with if you not a sophist, at least it means the ones who are clever and kind and who haven't felt the need to bend to these edicts can read this rather than have us trying to explain it.

I think it is useful to have science-minded people heading up that vs leaving a vacuum given where things have drain-circled, but also because we do have some pretty varied and difficult-to-explain needs. And that difficult-to-explain (when you are that ill) has been inadvertently taken advantage of 'in the name of helping'.

We do need a professional set-up that is interacting with these services everyone else who gets similarly ill need to access that provides the basics on what helps and the gist of how PEM etc works. And is providing lists that they can refer to as case studies of things that actually do work, contextualised specifically in order that they don't 'twist' it but realise that for example you provide a mobility aid to reduce exertion not to 'allow someone to exercise more'.

As these sorts of parts of 'treatment' are normally outsourced to HCPs by clinicians anyway (they just need to know that it needs to be energy conservation focus not the other way around) I can sort of see why - after getting rid of the psych nonsense embedded (and I call it nonsense because it isn't psychology, they just think it is rather than misogyny 'because it's called CBT' because they aren't people who did studies critically evaluating scientific psychology but a two day course selling that idea) - having pros writing documents noting the physical needs and adjustments could help for hospital care and home care alike and feed back up to clinicians potentially.

But I absolutely agree it needs clinicians at the top, and making the health assessments - not service assessment where HCPs are basically doing their own KPIs for their jobs - because that separation is supposed to be key about whether eg said adjustments or a treatment is working: that someone else is looking at the health. The two parts need to be separated.


There are a lot of things that go under this as a realisation when I think about the impact of eg having people like PhysiosforME setting a knowledge-base, even if that doesn't lead to 'exercises' but does help with ensuring the different severities and functional issues are better understood. Most of which shouldn't exist but do. I've listed them in a bit of a ramble in the next post.

And yes maybe this needs to be a case of shrinking the numbers, changing the position and job type slightly for these people and requiring them to follow this information - OTs can find the physiosforME info useful. I would quite like to discuss what organisational set-up or what we could propose could work to start transforming the landscape.

I'd also be intrigued to discuss what safeguards we might look to with this idea of 'patient input' when we all know how 'bucketed' things have been (and still are for some who want to be fatigue clinics) - given another key emphasis of the guideline was that ME actually is a condition based around PEM existing - and it seems that disregarding that and the [lack of] homogeinity both in type and experience (and level of coercion/impact of power differentials given our vulnerability and different support situations) is another issue allowing for 'unqualified' representation vs the task at hand.

Putting a vulnerable newly-diagnosed but in an OK situation 65yr old who might feel daunted and exhausted by their experience so far on a panel with bombastic HCPs talking about a 'reputation other patients have' that they themselves invented for us (don't be like Dave) isn't going to cut it in tackling how vulnerable young women in hospitals are or how problematic a workplace is without strong changes and adjustments there and at home. No matter how nice and enthusiastic they are, unless they are instead encouraged to be hearing (instead of discouraged) people's worst stories from other patients they do represent.

EDITED (from next post) to put the 'questions' at the end of here, and my 'reasons' for these needing to be discussed as issues in the next bit (I hope that works).

 

We also need people to underline that we aren't 'unfit'. Which seems to have been turned into a dirty word (ambiguous meanings used again) and mis-applied due to people being allowed to make their own assumptions (diagnoses they aren't qualified to make) based on how people look or sound (actually bigotry, they just don't realise it is due to certain people writing papers insinuating that if something 'is common' then you can assume it's that and not something else without even getting to the bottom of what it is specifically). Because it's this laypersons stuff that is leading people to think they can do these home-made stuff.

And yes indeed to start pointing out these wacky people being wacky. But also because we aren't alone as an illness in needing adjustments, but it seems the norms being pushed 'in the absence of knowledge' is to mobilise people and all this generic behavioural stuff. It just needs the opposite people setting the knowledge and ensuring that those down the chain are getting it and aren't doing silly dodgy sophist stuff to undermine it.

And yes I see that from our knowledge of PEM that is out there those doing 'mind therapy' in place of adjustments to allow someone to reduce PEM isn't far off a diabetes HCP deciding to offer their own piece of mind on behaving better whilst embedding mindfulness and gongs version of a course instead of adjustments, medication and advice on diabetes medication, tests and sugar issues.

And pretending it's OK because of this push claiming it 'prevents' and is therefore worthwhile as if everyone in the world who is ill 'has bad habits'. And of course the disabled could all do with a bit of motivation to 'be more positive about their lot' even if nothing is changed to be more manageable (that'll shut them up). Which again is bigotry. Followed by invalidation (another real psychology term, yes it does harm and is rude). Under the cover of something that claims that is OK because what (it's all fuzzied)?

I know this sort of job change wouldn't happen in other sectors without someone being on the case eventually. SO either it has been signed off for some reason/agenda, or they've sold it to people up the chain in the classic 'we've been seen to do/offer something' politics. I'm not sure that the same people doing the real job would cost more? Which is an interesting question, if the issue is that less people would avoid the services/drop out after 2 sessions and that's part of the business model?

So there is something that strikes me at the commissioning-level that is needed too - hence thinking having something in its place is better (even if it looks very different). Because I doubt it is all necessarily about anything other than not having an alternative.

Of course they don't realise they are only counter-intuitive because of 'initiatives' pushed (ironically on the back of 'research' claimed to be from our illness - so it is full-circle, because they abused that definition in order to make claims to push through other populations among other things but of an illness for which it couldn't be more harmful to) - there is a lot of 'pyjama paralysis' type stuff (again distorted because the worst of it was elderly people who had been stuck in hospital far too long and the solution/cause issue wasn't 'mobilisation' but getting them home or into better places anyway too) which this is just taking to an extreme.


And sadly without even knowing any of these professionals I suspect most of us are wary before meeting someone because whilst they might be great for anything else the rumour-mill and misinformation for ME creates not only a push for tosh to be delivered at us, but for us ourselves to be objectified and invalidated when we try and correct utter lies. We don't even get the privilege or our basic history of even non-medical stuff not being rewritten for convenience by some.

When you combine that with the research issues, and concerns limiting patient representation by potentially such panels not choosing or being accessible to the most ill or who have had the worst situations and the issue of those who might be there perhaps being 'put off' speaking for those real stories or to those who have them by rumour/contrived 'reputation' then we have an issue from both ends. Because the supply will never be capable until that methodological issue is fixed.

And I think that does need to also be tackled. Coercion and exclusion. Respect in the most basic human right sense of the word. Unbundling what that should mean as basics for any normal human who might one day find themselves unfortunate enough to be at each stage of ME, and in each situation that can occur to them due to all the stuff that has happened around it.

I'm very perturbed when I see the same attitude even in the research stage about whose voice counts based on what they are saying. As someone who did do such insight and research. Rule number one is that people should feel safe to speak. And if they can't at that stage... or only those 'who say the right things' etc then we have the same pretence it's an illness noone gets that ill with or has had serious actions wreck their life due to. Because those voices aren't welcomed and don't count/can't be real.


- how many times have you had a 'truth' or a 'life' or a 'personality' stuck on you by someone whilst you sit there stunned someone has the gall to do that. But they are basically told to not let us have a word in edgewise that is listened to it is the most disgusting side of human nature that some are training them in or giving permission for. This of course means if our bodies don't react as they want it must be 'us misinterpreting that' and not them, and if they are rude or something hurt it must be us being over-sensitive and all the other issues that bestows. Because telling them you used to be a weightlifter who fought fires gets ignored for assumptions that mean that contradiction is fudged out. Basically it is all about removing testimony and rewriting the very information and pertinent science (which is observation after all) all medicine relies on.

SO I'm sensitive not in the wallflower sense, but in the 'knowing it is priming and coercion' sense (yes, proper scientific psychology speaking here) when tropes are pushed with inferences of 'they've had their say' etc. It doesn't matter if those repeating it pretend or actually are that naive to claim they don't know that is why they've been continued to be pushed. But it is a bad habit they've been walked into. How do you switch back on respect and active listening without a proper programme for it?

 

Thank you all for the positive feedback

We have a page on our website specifically for physios https://www.physiosforme.com/physio-management and one that goes into some of the other tools in our toolbox that 'may' be appropriate https://www.physiosforme.com/what-else-can-i-do

We feel that physio is more than just exercise - for example we've had some really positive results looking at posture in two totally different situations; one changing seating and postural advice for a young adult trying to study and the other supporting a person with severe ME with postural adjustments in lying to support different body parts. All of these are "physio" inputs to me, although definitely with some crossover into the OT world! (I also have some great OT friends who help me out with advice and guidance which is invaluable).

We try and make it very clear that all and any physio input needs to be individualised as what works for one really doesn't work for others.
However there is a lot for most physios still to learn about ME!

 

No none of us are part of BACME or worked in specialist ME/CFS clinics although we have worked with people with ME outside these clinics

I've also worked in a Long Covid clinic at the trust I work at- they asked me to help specifically for my ME expertise as they realised they needed to know more about how to manage people with PEM

 

agreed

 

This is an interesting point, particularly when combined with @Kitty 's experiences because here is the solution perhaps 'cut out the middle-man' and move any funding that might be associated with it to a group who are producing the research-led materials to eg the more 'general' services and lobbying to make sure there is funding and support behind the adjustments that are most health-preserving for those with ME?

I do also think that there perhaps needs to be booklets/research on the 'moments of truth' / 'sliding doors' type stuff that timely and appropriate support instead of inappropriate pushing makes to the long-term. It is sort of like the 'added value' of schools except acknowledging that it's about reducing the potential for impact/deterioration when over-exertion occurs or virus etc long term (go back to go forward, 'buffering', or Amy Mooney: allow to regain health vs 'activate')

But I don't know enough about the issues re: OT within clinics and if there is a pattern in the same way, and if this is coming from BACME/the OT side or what?

It does feel like there is a specialism that lies in the overlap on the opposite circle-sector to where it can often seem BACME currently overlaps physio-OT (the most exercise rehab/motivational-focused ones) which is why I mention it here, and that those with this knowledge and skills and research approach exist but I don't know what the terms for the sub-subjects are, or whether it is about 'approach' in the sense of whether something is research-led and what they perceive as 'methodology' and 'science' there?

 

The people I saw offered no therapies at all and had no connection with ME clinics. That may have been important.

Their job was to look at individuals' needs. They didn't give me any sense of arriving pre-equipped with theories about what would be best for me based on my diagnosis; they listened, observed, and asked questions about my impairment, treating it like any other.

There was no mention of rehabilitation, either, only safety and preservation of function. Once I was into my 50s there was an emphasis on future proofing, based on the assumption that my needs would slowly become greater with age. It all seemed very common sense, and a world removed from all the hedging, subtext, and politics involved when pwME are in contact with most health services.

 

Why is the phrase "exercise-based treatments" linked to the word "progress" in this sentence? The implication in "unless the person feels ready to progress" is that it is normal for PWME not to exercise and not to want to progress.

How can they even use the phrase "exercise-based treatments" - exercise is not a treatment for ME, it is contraindicated.

I have felt ready to progress for 10 years. When I notice an improvement, I might try out my new envelope by being more physically active. This is not a treatment, I can't exercise to make myself better, although as soon as I feel better I might exercise more as a result of that. Enough of the Cart-Horse-ian logic.

 

But did you need a physio to supervise it?

Or would the effort of needing to attend an appointment consume all your spare energy (plus some you didn't really have), so it was no longer available for an enjoyable activity? And put you at risk of ending up with PEM that wouldn't have occurred if you hadn't had to go out to an appointment or get stuck in traffic on the way home?