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

[Keela Too]

It would seem to me that the word “dysregulation” is another one that has been captured by one group and used to mean emotional dysregulation, but honestly is shouldn’t mean that. It should apply equally to physiological dysregulation.

 

[Trish]

Fair enough, InitialConditions, it's a while since I read the document. But given that psychologists and presumably psychotherapists including CBT therapists have a completely different definition of the same term, I think they need to specify that they are talking about physiological dysregulation, not emotional dysregulation in all their communications.

 

[InitialConditions]

Fair enough, InitialConditions, it's a while since I read the document. But given that psychologists and presumably psychotherapists including CBT therapists have a completely different definition of the same term, I think they need to specify that they are talking about physiological dysregulation, not emotional dysregulation in all their communications.

Yep the term is a little unfortunate, so that would help.

I think, and hope, we are certainly past 'emotional dysregulation'. Whether we are past 'thoughts and behaviours maintaining dysregulation'... I'm not so sure.

 

[Keela Too]

Might not “emotional dysregulation” be caused by an underlying “physiological dysregulation”?

The former may simply be a symptom of the latter?

Though of course the BPS folk may say that the latter gets caused by the inability of the individual to regulate their personal emotions. Why do they always twist things to blame the patient?

 

[InitialConditions]

Might not “emotional dysregulation” be caused by an underlying “physiological dysregulation”?

The former may simply be a symptom of the latter?

Though of course the BPS folk may say that the latter gets caused by the inability of the individual to regulate their personal emotions. Why do they always twist things to blame the patient?

I think this is probably the case, and could be due to hypothalamic–pituitary–adrenal-axis dysregulation. I notice when I'm crashing my mood sinks massively. It's as if it's a direct physical reaction, and it doesn't matter what's going on in my mind.

 

[NelliePledge]

The term would need to be clearly explained to avoid any misinterpretation.

 

[Keela Too]

I think this is probably the case, and could be due to hypothalamic–pituitary–adrenal-axis dysregulation. I notice when I'm crashing my mood sinks massively. It's as if it's a direct physical reaction, and it doesn't matter what's going on in my mind.

Yes this! I find the world looks altogether more bleak, and almost scary, when I’m in PEM. It’s not as terrible now as it was when my ME was worse, but it’s still something that I now know to expect.

Luckily for me, that aspect of PEM rarely lasts longer than 24 hours even if the other physical ick takes longer to clear. Knowing what it is, and being able to know it will pass is a big help in coping with it.

People who experience this as a long-term problem must find themselves in some sort of personal hell, especially when the blame-game folk get going.

 

[Barry]

I presume the "dysregulation" here simply means where certain normal regulation systems are not working properly?

 

[Peter T]

I think this is probably the case, and could be due to hypothalamic–pituitary–adrenal-axis dysregulation. I notice when I'm crashing my mood sinks massively. It's as if it's a direct physical reaction, and it doesn't matter what's going on in my mind.

I used to find that a sudden drop in my mood, with no obvious situational trigger was an indicator of immanent worsening of my ME symptoms, a sort of aura warning of PEM.

Once I decided it was probably a physiological issue, rather than psychological, it was quite easy to ignore psychologically other than just a warning that the need to rest would forced upon me in the next few hours. This used to happen in the period after the severe relapse that forced my ill health retirement when my ME was stabilising and then displaying some gradual spontaneous improvement.

I am not aware of this currently although there have been several subsequent relapses and my ME is now worse than when the ‘aura’ effect used to happen. Now my warning for severe PEM is the more standard symptoms resembling early flue or cold symptoms.

 

[Jonathan Edwards]

Yes, 'emotional dysregulation' is an unhelpful red herring here. The Yorkshire group make it explicit that they talk about dysregulation the way I do - applicable to immunology, kidney disease or whatever is not being regulated properly.

If I was asked how to categorise ME/CFS I might well say it was probably a state of dysregulation, like RA and hypertension are.

I am interested in trying to find a place where we can compare notes with these people in a constructive fashion. We may go separate ways but I am not so sure we have to.

After all, patients want explanations. Health professionals have to provide some sort of answer. That can be just 'I don't know' but I see merit in discussing symptoms in terms of physiology so that people can feel they have some sort of handle on them. Things like heart rate are such handles.

Knowing how to explain may be quite a difficult task for physios and OTs when just as much on the biomedical as on the BPS side they are surrounded by a literature of mostly speculative pseudoscience. How are they to know that quoting Morris and Maes may not be a very good idea?

Moreover, my reading of their document makes me think it has grown out of listening to what patients say first and foremost.

 

[FMMM1]

Might not “emotional dysregulation” be caused by an underlying “physiological dysregulation”?

The former may simply be a symptom of the latter?

Though of course the BPS folk may say that the latter gets caused by the inability of the individual to regulate their personal emotions. Why do they always twist things to blame the patient?

Yea I agree "Might not “emotional dysregulation” be caused by an underlying “physiological dysregulation”?" so if you fix the underlying physiological problem then the consequential impact on your mental health (not sure that great term) may well disappear.

"Though of course the BPS folk may say that the latter gets caused by the inability of the individual to regulate their personal emotions. Why do they always twist things to blame the patient?"
Yea these seem to blame your "psychology" or whatever but how come, if that is the case, their "psychological" treatment doesn't work - surely one explanation is that the problem isn't psychological it's biomedical.

 

[FMMM1]

I am interested in trying to find a place where we can compare notes with these people in a constructive fashion. We may go separate ways but I am not so sure we have to.

After all, patients want explanations. Health professionals have to provide some sort of answer. That can be just 'I don't know' but I see merit in discussing symptoms in terms of physiology so that people can feel they have some sort of handle on them. Things like heart rate are such handles.

Knowing how to explain may be quite a difficult task for physios and OTs when just as much on the biomedical as on the BPS side they are surrounded by a literature of mostly speculative pseudoscience. How are they to know that quoting Morris and Maes may not be a very good idea?

Moreover, my reading of their document makes me think it has grown out of listening to what patients say first and foremost.

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.

We can challenge/have a go at the system but if we can work constructively, with care providers, then that sounds more likely to be successful.

@CRG commented "Winning a battle but losing any ensuing peace isn't going to advance things much"**.

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.


*https://www.s4me.info/threads/nice-...e-17th-august-2021.21897/page-195#post-382729

**https://www.s4me.info/threads/legal...ted-1st-october-2021.22626/page-7#post-380058

 

[livinglighter]

I think this is probably the case, and could be due to hypothalamic–pituitary–adrenal-axis dysregulation. I notice when I'm crashing my mood sinks massively. It's as if it's a direct physical reaction, and it doesn't matter what's going on in my mind.

The Dysregulation model - I am very familiar with it. IF you were given a diagnosis of CFS/ME at Royal Free fatigue clinic and provided with therapies, it 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. I’ll post it, along with the explanation I was provided about it in my next post.

Knowing how to explain may be quite a difficult task for physios and OTs

In my case, it was only the physio’s explaining it. The model was used to explain functioning difficulties as a result of physiological problems.

 

[Sean]

Might not “emotional dysregulation” be caused by an underlying “physiological dysregulation”?

The former may simply be a symptom of the latter?

Though of course the BPS folk may say that the latter gets caused by the inability of the individual to regulate their personal emotions. Why do they always twist things to blame the patient?

Yea I agree "Might not “emotional dysregulation” be caused by an underlying “physiological dysregulation”?" so if you fix the underlying physiological problem then the consequential impact on your mental health (not sure that great term) may well disappear.

Causal direction matters.

 

[Jonathan Edwards]

I repeat myself but it helps to try to get clearer what I want to know

A theory of dysregulation needs two parts.

1. An account of the mechanisms that explain how things are normally controlled (homeostatic).

2. An account of a quite different mechanism that explains why in disease the normal rules are not followed.

So an electrical engineer will have one explanation for how a thermostat works, dealing with thermal expansion, electrical contacts, electronic read outs and so on. He will have completely different explanations for why a thermostat is not working dealing with the sensor being positioned in the wrong room or the wire being broken or the circuit board wet.

So to know how to put things right in ME/CFS we need to know not just how the relevant systems are regulated but what it is that is pushing the regulation off centre. What I see so far are accounts of how systems are regulated and speculations about what might happen if they were not but nothing about the mechanism of dysregulation.

The accounts tend to be like the 'molecular mimicry' story for autoimmunity. These are the rules; disease is explained by the rules not quite being followed. But why are they not followed?

If you ask the electrical engineer he may say 'oh, when they made this particular model of thermostat they included a loop in the circuit that once it has triggered below a certain temperature it cannot switch off'. Reasons for regulation going wrong tend to be very specific and not things you can predict from general principles. They are quirks. Similarly, rheumatoid arthritis is a quirk, as is myeloma or hypertension. We want to know what the quirk is for ME. That requires very careful analysis of data. And we desperately need some hard data.

 

[Trish]

I have been exploring further by reading these documents:

BACME Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) October 2020 (1 page)

BACME - ME/CFS Guide to Therapy October 2020 (12 pages)

BACME An Introduction to Dysregulation in ME/CFS August 2021 (18 pages) The Yorkshire Clinic article by Sue Pemberton et al.

BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline
Dom Salisbury's blog this thread is about

I come to the conclusion that BACME has decided to agree that ME/CFS is physiological, with a mix of dysregulation in lots of systems: Autonomic system, HPA axis, immune system, metabolism, and nervous system. For each system Sue Pemberton gives a set of symptoms that can result from dysregulation in this system, most of which occur in ME/CFS. So the model is a mish mash of all possible physiological causes and effects, which to me takes us no further forward. We know there is a physiological basis, calling it dysregulation is just acknowledging there is something physiological, not what it is - they just thow everything in the mix they can think of.

There is also the central sensitisation model.

So the thinking of the therapists seems to be based on the supreme confidence that they can play a central role, and rehabilitate patients. The reasoning goes - there is dysregulation, so our task is to re-regulate with behavioural changes; there is sensitisation, so our task is to de-sensitise with behavioural changes.

So we get on to treatment. All the documents seem to work on the assumption that they know how to 'rehabilitate' patients by re-regulation and desensitisation. There is a huge unevidenced leap from acknowledging the existence of dysregulation and sensitisation, to the assumption that therapists know how to reverse these with behavioural changes. They all assume regulating sleep patterns and activity patterns will start this process of re-regulation, and that once this is achieved, desensitisation, leading to improvement in health and activity capacity, can be done by gradually increasing activity.

I have seen no research evidence that 'normalising' sleep patterns, finding a baseline of activity, and then gradually increasing activity leads to improvement in patient's health or capacity to function, yet this seems to be what all these papers are based on.

I don't understand why anyone would support these BACME models that have no research evidence to support them. I have seen no evidence that any therapy can 're-regulate' or 'desensitise' people with ME/CFS.

I think there is a real danger here of assuming therapists like Sue Pemberton know what they are talking about any more than people like Chalder, Sharpe and Crawley do.

 

[Jonathan Edwards]

I think there is a real danger here of assuming therapists like Sue Pemberton know what they are talking about any more than people like Chalder, Sharpe and Crawley do.

I agree with all of that. But you have to start somewhere. For me the situation is very reminiscent of that for RA in the early 1980s. At least there is a desire to look at some physiological systems about which we can generate testable theories of going wrong.

The current explanations are not explanations, for the reasons in my last post. But the general concept of dysregulation of physiological control systems seems to me much the most plausible.

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.

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 have already had some new thoughts looking at the dysregulation paper. Autonomic signals may be much more relevant than I had assumed, although I think buzzwords like 'dysautonomia' are blind alleys. ME does to look at all like the well known cases of dysautonomia like Shy-Drager disease.

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.

 

[Simbindi]

I have seen no research evidence that 'normalising' sleep patterns, finding a baseline of activity, and then gradually increasing activity leads to improvement in patient's health or capacity to function, yet this seems to be what all these papers are based on.

I don't understand why anyone would support these BACME models that have no research evidence to support them. I have seen no evidence that any therapy can 're-regulate' or 'desensitise' people with ME/CFS.

I think there is a real danger here of assuming therapists like Sue Pemberton know what they are talking about any more than people like Chalder, Sharpe and Crawley do.

Absolutely, alarms bells rang for me too when I was re-reading these documents last night.

I think we need to be very aware that these 'fatigue clinics' are primarily looking at either very mild ME/CFS patients or more likely, people burned out from 'stress', over work, busy lives etc. That is, people with either no underlying pathology or in the earliest stages of ME, when making life adjustments may be beneficial enough to look like recovery.

I am still concerned that the Yorkshire clinic charges circa £33 for a 'pre-treatment' session, which effectively de-selects those patients that are either cynical about their model and treatment plan, or at the end of the session feel they cannot 'comply' with what will be expected of them (i.e. the 'treatment burden' is too much). This feels like the approach of the Lightning Process and, at the very least, will result in more positive outcomes and feedback for the clinic's 'statistics'. Also, it feels like more judgment on patients who decide the treatment 'isn't for them'.

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

 

[Trish]

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?

 

[Simbindi]

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.

For example, stiffness is actually a major part of my ME, but is never asked about or recorded. In the winter I am usually so stiff I can barely move and walking down the stairs is incredibly painful and I can't even think about attempting to do this until I have been awake and gradually moving my legs in bed for a couple of hours. But there is nothing on my medical notes about this. 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.