[Blog] BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline

[Skycloud]

I understand the scepticism about therapists' motivations but to be fair that is the way they have been trained to think for decades by medics who should know better but like to have somewhere to dump boring diseases they do to understand. One could ignore the therapists but I don't see that as a viable option. Research needs a clinical base. To study disease you need somewhere to observe people with the disease and get familiar with the problem. Studying mice is no help.

I very much agree with JE.

I think it would fairly quickly be apparent which of them are really interested in developing well evidenced practice. These things are a process and you’ve got to start somewhere.

 

[Peter T]

A very major part of my progress route in RA was discounting possible theories by careful observation in the clinic that showed that they would not work. Elimination is very useful. So I think it is worth taking the splurge of suggestions that BACME have produced and going through each one to see which can be put aside and what is left.

I sometimes wonder if this is how a lot of science works. You need stages of synthesis, which more often than not requires people to be sufficiently over confident to assert things on inadequate knowledge, this then set the tone for the next few decades of research proving just how wrong they were.

I like the example of my undergraduate tutor when I was an undergraduate, he had a brilliant mind, but this prevented him from overlooking the flaws in any potential synthesis of his own. He had as young man worked with Piaget in Geneva, but then spent the next forty plus years clearly and incontrovertibly demonstrating why Piaget was wrong.

I suppose science in this pathway does have the problem that, if the initial synthesis is so very wrong and also universally adopted, that it can, as with the BPS approach to ME effectively block appropriate research for those several decades. In this context we saw years of people trying to prove how right such as PACE was rather than how wrong it is.

 

[Peter T]

I really wish we had clinics that only accepted patients who meet the new NICE ME/CFS criteria, so that the clinicians cab actually start understanding what ME/CFS is and is not.

In theory I see nothing wrong with clinics that see a variety of patients, the problems arise when they assume their caseload are a homogenous grouping and respond with a one size fits all approach.

I suppose we should be asking, how is it that the current ME/CFS clinics are unable to distinguish between their depressed clients, those with burnout, those with idiopathic chronic fatigue, if such exists, and those with ME displaying PEM.

I suppose, at least in the UK, the specialist services were set up to deliver standardised treatment packages that deliberately chose to exclude any one with more severe problems, which has limited the accumulation of shared clinical experience/insight.

BACKME are at least beginning to recognise that the premises their services were initially based on are wrong, but have failed to develop an understanding of ME as a whole, that includes managing orthostatic issues, food intolerances, mobility aids, home adaptations, etc, etc.

The dysregulation model may help refocus research, but if it does not help clinicians also focus on those aspects of patient care where they can offer genuinely helpful support it could be as harmful as the deconditioning model.

Clinical care that is rehabilitation focused, even if its current model is less objectionable than the previous model, is at our current state of knowledge at best unhelpful and at worst harmful. All that clinical care can reasonably offer at present is working with the patient to identify current practical issues and attempt to provide pragmatic solutions to their problems.

 

[Simbindi]

In theory I see nothing wrong with clinics that see a variety of patients, the problems arise when they assume their caseload are a homogenous grouping and respond with a one size fits all approach.

I think the problem will come in the funding model, with funding being spread so thinly that these general fatigue and pain clinics will never be able to offer the long term care planning and the annual reviews stipulated in the new NICE ME/CFS guideline. Neither will they build up the specialists required to advise and support GPs with the long term ME/CFS patients being managed solely in primary care. It's a model that is set up to fail those ME/CFS patients who have already suffered from the worst healthcare neglect over decades.

 

[Barry]

was based on the clinic’s ‘dysregulation’ model, which explained ME as a physical disease involving the hypothalamic–pituitary–adrenal-axis dysregulation and exertion intolerance caused by a hyper immune response. I have the model from the clinic they used to explain the underlying pathology.

May one day prove to be on the right track, but did they make it clear at the time there was no evidence to back it up? That it was what they sincerely believed, not what had been scientifically proven to be true?

 

[Kitty]

So reading what @Trish, @Jonathan Edwards, @Simbindi, and @Peter Trewhitt have written, should new-style clinics begin with the following?

We can't put ME right, but we can:

• Learn how to diagnose it reliably and record a detailed picture of the onset pattern, symptom profile, and natural history;
  
• Learn in collaboration with patients what makes it worse and how to mitigate it as much as possible;
  
• Research reliable sources of information, advice and support, and signpost new patients to them;
• Act as a liaison point for GPs, other specialists, and researchers.

 

[Barry]

The way we made progress in RA was for a group of people prepared to be wrong to sit around in an office firing off dumb ideas at each other and others saying why they were dumb - which meant the answer must be somewhere else. Once we had established that virtually all ideas were dumb we began to see where somewhere else had to be. We are at the dumb ideas stage for ME but it is a crucial part of the process.

Yes. A crucial part of this process, from my engineering experience anyway, is to get all the ideas in first before you start then working through to filter the dumb ideas out. Some ideas that might seem dumb on first mention, can sometimes prove the most useful contributors to a good solution. And if you shoot down the nth suggestion when first mooted, it may block a later suggestion that might have been highly insightful. The initial stage needs to have all ideas ventured without imposing unconscious bias onto people’s later suggestions.

 

[Simbindi]

It might be useful if all the specialist ME/CFS clinics offered patients ME specific fall avoidance courses, both as an outpatient and via a domiciliary service. Because the standard fall services are definitely not set up for PWME. Falls have become an increasing problem for me the worse my ME has become.

Edit: This alone would help the therapists learn more about ME.

 

[FMMM1]

Thanks, @Jonathan Edwards, I can see that makes sense for the long term benefit of patients in terms of finding out what is actually going on rather than working on blind assumptions.

I guess two questions follow from that for me:

1. Who should be doing the sitting around the table firing dumb questions at each other and eliminating the non starters etc? With RA, was it the therapists you did this with, or was it other doctor/scientists? The answer you came up with was not based, as far as I know, on what the therapists were doing in the clinics with RA patients, it was based on deep study of physiological sciences.

2. What happens in the meantime to patients while we wait for experts to delve into dumb ideas and come up with answers? Is it possible for the therapists in BACME to be trusted to do the sort of research that will really find out whether any of these behavioural strategies they are so confidently prescribing are actually of any benefit to patients, or are possibly causing harm? If not, who should be doing that research? If so, how can we help them do that research properly, and in the meantime for those patients not part of specific research projects, to protect them from the potential ongoing harm of being pushed to change sleep and activity patterns in unevidenced ways?

I was going to ask @Jonathan Edwards where's the office/safe space to have those discussions and as per @Trish who should be in the room? Jonathan referred to physical chemistry being key to understand RA - presumably physical chemists were available via the university (and willing/able to do something very useful), that give some idea of the diverse range of people who could ultimately be involved.

Chris Pontings group will hopefully provide useful information from GWAS @Simon M

In terms of other studies, like activity and ways to examine whether activity management might help, MRC might be a suitable convenor - they got folks together to identify what might be worth trying previously and the GWAS study was the outcome.

Perhaps MRC would go down that route again, i.e. get @Jonathan Edwards et al into a room to look at potential research areas - particularly after the outcome of the NICE guideline review.

If some route is identified, then there may be a job for the patient community e.g. lobbying for MRC to run another review to look at potential research areas.

 

[Simbindi]

Research reliable sources of information, advice and support, and signpost new patients to them;

Although I wouldn't currently trust them to be competent to do this at the present time!

 

[Barry]

Not able to scan this whole thread at the moment, but it occurs to me that if clinics genuinely felt part of a process intended to help patients, not just in the moment, but with a crucial role in furthering research, that would help instill a new mindset.

 

[Simbindi]

It might be useful of all the specialist ME/CFS clinics offered patients ME specific fall avoidance courses, both as an outpatient and via a domiciliary service. Because the standard fall services are definitely not set up for PWME. Falls have become an increasing problem for me the worse my ME has become.

Edit: This alone would help the therapists learn more about ME.

Understanding why PWME suffer from falls and working out the best course for falls avoidance in ME could be the sort of area that the NIHR might fund a study into.

 

[MEMarge]

Yea there seems to be some supporting factors here e.g. the fact that there appears to have been a consensus (including the NHS England representative*) that the current guideline didn't meet patients needs.


In terms of space to have that dialogue - @MEMarge mentioned that there are some discussion going on via "Priority Setting Partnerships (PSPs)" but I'm not sure whether that would be a suitable vehicle.

I am asking the James Lind Alliance staff if they can obtain a list of projects, title and costs, from their "colleagues" at NIHR.

 

[Kitty]

This alone would help the therapists learn more about ME.

That's a good thought.

I'm pretty sure I know what induces my falls – PEM-induced clumsiness, "spaciness", muscle rigidity, and dizziness – but am also pretty sure that a lot of therapists aren't even aware of those symptoms.


ETA: small clarification.

 

[Simbindi]

That's a good thought.

I'm pretty sure I know what induces my falls – PEM-induced clumsiness, "spaciness", muscle rigidity, and dizziness – but am also pretty sure that a lot of therapists aren't even aware of those symptoms.


ETA: small clarification.

Yes. it seems from my reading of the standard fall-prevention clinics that they think falls are due to 'frailty' and their courses are only aimed at mitigating this. So they are more about getting people to 'build muscle strength' through exercises etc.

 

[JemPD]

I think a big issue is that our specific symptoms are not even asked about, much less recorded by clinicians. Instead the 'chronic fatigue' becomes the focus of attention.... This is still the case in the new NICE guidelines, because of all the focus on 'activity management' and what our 'functional ability' is and how activity levels can 'be improved', rather than symptoms reduced. ...
There is absolutely no interest from my GP in even recording my multiple symptoms, much less monitoring them.... So the question is, what does ME/CFS clinically look like? Surely, this is the very first thing that needs to be understood by clinicians, therapists and researchers.

yes. I have read several articles/presentations of the dysregulation model over the last few yrs. I'm not up to rereading to find the bits i'm going to refer to sorry.

@Jonathan Edwards and think the points/suggestions you're making sound very sensible & promising, But i am concerned that in the papers i have read, they dont really seem to know what ME is, as opposed to burn out etc. For example in one of the papers they discussed sensory sensitivities as being a nervous system on 'high alert' - sympathetic nervous system activated etc.

But my sensory sensitivities are much BETTER when i am in fight/flight mode - i can tolerate much much more sound & light (for a while - the consequences of having had much much more will be the same -ie bad PEM), but while i'm high on adrenaline i can enjoy my favourite music played pretty loud, but when i'm calm & relaxed, it has to be very low volume & is uncomfortable at best.
And they also seem to think that they are an exposure problem - that we are in silent darkness & then (of course) the light & sound hurts because we're not used to it. And therefore gradually exposing to a little more each time will 're-regulate'.... but it doesnt work like that. The reality is that when well rested i can enjoy listening to music/ a busy environment like a shop etc, or sitting in the sunshine, but as i begin to tire (after 5-15 mins depending on how demanding the situation is physically (sitting down or reclining/standing up) & how much sensory input there is.... then the sound/light begins to hurt more & more until it is physical torture, not just to eyes/ears but to whole body.... ie the more the exposure the worse it is, not the other way around.

And the inclusion of people who find loud noise/bright light distressing because they have depression/anxiety issues (ie its distressing at the time but has little ongoing impact) in the cohort, just muddies the waters.

The other thing is sleep, all these ruddy clinics seem obsessed with sleep hygiene. IT DOESNT ****** WORK in ME! You can control bed/wake times, screen time, light, not sleeping in the day etc etc all you like, but all it does is make the ME worse.

The more i sleep the better i am able to sleep. Regardless of the time of day.
If i drop off to sleep for an hour during one of my rest periods during the day, i think 'oh good i'll sleep better tonight', and i do. PEM messes with sleep. It for some reason prevents sleep. And no amount of behavioural modification will change that, other than perhaps doing what that particular patient has found helps them sleep.... & bugger the usual 'rules'!

But of course it all works nicely in those people who have CF for some other reason such as burn out/stress, poor diet/sleep hygiene etc alone.

So if we are going with the Dysregulation model, we have to find a way to make it really explicit to all concerned, that this isnt just the usual dysregulation that can be altered by behavioural means, and if the patient says 'hmm that isnt the case/doesnt work for me'.... THEY MUST BE BELIEVED and the professional see that as a thing for curiosity, rather than the current assumption that the patient doesnt want it to work or cant be arsed to do it.

The system is dysregulated in a weird/unknown way, so the usual methods for re-regulation (like sleep hygiene) wont work as well as usual, or at all.... Surely it might be that from those usual methods not working, answers might be found, certainly i'd have thought at least subgroups might be found. ie why dont they work? What isnt responding? Why isnt it responding?

Which i think may be something like what you're suggesting Jonathan?

But its critical, that if you're going to start talking about the DysR Model, than please include the words 'physiological', and something like ''& for which the standard rehab/behavioural reregulation methods fail."

 

[Nightsong]

The uncritical acceptance by BACME and others of "HPA axis" dysregulation bothers me. This is based on small-scale studies with minor findings such as mild hypocortisolaemia and blunted responses to (synthetic) ACTH relative to a control group - but cortisol secretion is pulsatile and the amplitude of those pulses has circadian periodicity, so these differences could well be the result of disturbed diurnal rhythm and abnormal sleep architecture rather than causal. As far as I'm aware none of these studies have included groups with known sleep disorders or even delayed sleep-phase syndrome as comparators and are of generally low quality. There is definitely further research that can be done in the neuroendocrine area, but I wouldn't consider any of the papers I've read to constitute definitive proof of an "HPA axis" problem.

I think "dysautonomia" has become synonymous with POTS, perhaps simply because "POTS" sounds trivial. Never seen that term used to refer to pure autonomic failure or multiple system atrophy. Further autonomic function research would be very welcome.

There may be areas where a collaborative approach with BACME might be helpful. They would certainly benefit from more robust patient representation and hearing from clinicians with a different perspective to the one that they've historically espoused (and they may be changed for the better as a result of those approaches, if they're open to them), but what they have published is too handwavy to be of any clinical or research-related relevance. I also don't forget that some of those associated with BACME have caused harm (or that they invited Fink to their conference), and I've yet to see any evidence that they have changed in any meaningful way.

 

[Simbindi]

The system is dysregulated in a weird/unknown way, so the usual methods for re-regulation (like sleep hygiene) wont work as well as usual, or at all.... Surely it might be that from those usual methods not working, answers might be found, certainly i'd have thought at least subgroups might be found. ie why dont they work? What isnt responding? Why isnt it responding?

Yes. This would seem to point to the fact that their is an underlying pathology (or pathologies) in ME. That is why I am very cynical about the Yorkshire Fatigue Clinic's approach. Because they must be weeding out a lot of the ME patients who have already figured that 're-regulation' techniques and strategies do not work for them. So they are seeing a very skewed picture. Of course doing certain activities will make a person with burnout feel worse afterwards, but that is not the same as exertion inducing delayed PEM/PESE in a PWME.

 

[Jonathan Edwards]

The system is dysregulated in a weird/unknown way, so the usual methods for re-regulation (like sleep hygiene) wont work as well as usual, or at all.... Surely it might be that from those usual methods not working, answers might be found, certainly i'd have thought at least subgroups might be found. ie why dont they work? What isnt responding? Why isnt it responding?

Yes this is exactly what I am trying to say.

More than that, dysregulation is always weird and unknown. Solving it has nothing to do with pushing things according to regulation. A broken thermostat does not keep the temperature right just because you put it very high when you are cold and very low when you are hot. It goes on not working.

 

[Wonko]

A broken/worn thermostatic control, does however respond well to such behaviour, as they are generally 'not working right' at a particular setting, probably down to metaphorical gunk buildup.

The difference in behaviours would, in the days of the past, tell people if the thermostat, or the control, was not entirely functional - these days of course they just change the thermostat (a tenner) and charge £75 call out and £60 labour for a 3 minute non skilled job, and then do the very same thing again, and again, when that fix doesn't work, with a look that says 'I don't know how you're breaking these thermostats, but as they all work, it must be you sabotaging them'.

The problem of course went away when the controller was replaced.

So, my ME might be curable, with 3 entirely new bodies, and a new brain - in the absence of someone who knows how to diagnose and fix things, and isn't incentivised not to.