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

https://domsalisbury.github.io/mecfs/bacme_dysregulation/

I have written more about the emerging theme of a 'dysregulation model of ME/CFS' from members of BACME, and what this might actually mean in practice.

Coincidentally, @Sly Saint has today posted about an addition to the BACME website of a new document about the dysregulation model. (See here: [UK] BACME event: 'A Conversation about...Covid' | 10 Aug 2021 )

I had not seen that document until a few minutes ago, although it seems to be based on a document by the Yorkshire Fatigue Clinic that forms a key part of my blog post.

 

I was thinking about this too, really since the draft guidelines were published. I think S4ME picked up on this, but I can't remember what our group submitted in relation to it in the final comments sent to NICE.

I am definitely not anticipating the final NICE guidelines to deal with all the issues patients need addressing. I think the best we can hope for is a 'rudder change' and then continue to work from there. Obviously there is no sound evidence for the dysregulation model anymore than for the deconditioning model, we don't know the cause of ME/CFS.

So, depending on what happens in practice after the publication of the final guidelines, I think ME groups may need to push for regular reviews of the guidelines (if they have left the loopholes we anticipate and if this results in continuing harm to patients in England).

 

I also think this may be why we didn't see more resignations from the committee - there is still room for the CFS (now more CF orientated) clinics to continue offering CBT and 'flexible' GET.

Edit: Not all of the BPS NICE committee members were heavily involved in promoting the deconditioning model, their (conflict of) interests are in continuing being able to offer BPS therapy, rather than involvement with (for example) insurance companies or poor research.

 

I suspect that many BPS advocates were never particularly attached to the deconditioning model, rather what collectively defines them is their belief in the supremacy of psychological/behavioural interventions.

Reading through the ‘dysregulation model’ document, albeit fairly superficially, even though it could be seen as fluctuating between speculation and pure fantasy, there is much that is an improvement on how patients would be treated, but central to it still the belief that get the behaviour and the attitudes right and the patient will magically improve, and keep on repeating and this magic will make at least the well behaved cooperative patients better.

We are still being set up for harm, albeit further down the road, most likely after discharge from the service.

[added - I think this approach will have the benefit of sounding more scientific to the naive patient than the deconditioning model, and more likely to achieve some improvement during a short six or even twelve week intervention package. So the clinicians will be much happier, though it leaves the patient picking up the pieces by themselves some months down the line still with a sense of it being somehow their fault for not doing things right.]

[further added - Much of the implications of this is symptom management, but unfortunately symptom management combined with a belief that this will ultimately be cure. This banks on getting the situation right and spontaneous recovery will magically occur, even though we haven’t any real inkling as to who might improve, who will go on fluctuating and who will deteriorate.]

 

Completely agree.

I'm hopeful that if nothing else we could use the fact that the change in guidelines demonstrates that

1. treatments that are based on unproven hypotheses are experimental and there is no guarantee that they will work

2. lack of long term follow ups by the clinics means that the very people who should have been aware of the long term issues with treatments completely missed the chance to make sure the treatments have the intended long term effect. If clinics.continue to provide any similar treatment - whatever they call it- then they have a duty to gather long term follow up information, including about harms.

3. Patients should be made aware from the start that there is no scientific evidence underpinning the treatment and if they haven't been given clear information then there is an problem with informed consent.

Even if the final guidelines are a positive step forward this will only be the start of a lot of work making sure that it makes a difference to patient care.

I hope the various ME charities are preparing to do that.

 

I just looked up the Yorkshire Fatigue Clinic. I was shocked that they encourage patients to sign themselves and their carers up to an initial workshop - for a fee - to judge whether or not they would be happy with the approach taken. This rather smacks of the approach taken with the Lightning Process, and would seem a 'good' way to improve the clinics 'outcomes' as they have excluded the most cynical (or knowledgeable) patients from their rehabilitation programme.

http://www.yorkshirefatigueclinic.co.uk/step-programme

 

One of the most serious problems with even those clinics that feel they are trying to be helpful to ME/CFS patients is that they don't take account of the indirect harm their 'optimistic' view of being able to help people 'recover' has. The DWP will certainly take this to mean that ME/CFS is rarely, if ever, a permanent or progressive illness, even in its most serious manifestation. This is a considerable concern for me, especially in light of the new out of work and disability Green Paper and the continued citations by the DWP that 'work is good for health'.

 

On an MEA Facebook post of the recent YouTube video on physiotherapy for ME from London’s Royal Free Hospital there was a comment from a patient of the featured physio including a throwaway half sentence about being ‘happy to pay’, which left me confused.

 

I think some NHS services seem to offer the option for private treatments, in the same way that private companies can offer certain treatments on the NHS, providing they charge CCGs the NHS rates. The London hospitals particularly seem to have private wings on the same sites as the main NHS hospitals.

 

I agree with the points in the blog. 'Dysregulation' is a fairy story.

Modern medicine is NOT THEORY-DRIVEN. Physiotherapists need to come to terms with that. It is evidence driven.

If there is no reliable evidence from interventional studies then the evidence should come from experienced patients who know what the illness is like - not what healthcare professionals think it ought to be like.

 

The deconditioning model was needed because they said that ME was now to be called CFS and treated with exercise.

But ME was a disease where exercise made you worse so how do you reconcile that? Ah! Deconditioning makes you feel bad when you start to exercise so that explains everything.

And we are now on the downward slide to the PACE trial.

 

Deconditioning was not the invention of SW. The concept was used by Cott and probably others as part of the Illness Behaviour model. It was they who introduced CBT and exercise as a form of treatment. I suspect that the object of the Maudsley/Oxford model was to bring the UK into line with US/Canadian practice.

 

Sorry for being ignorant, but I haven't been actively reading here in a while. Where can I read about the NICE stuff? Would anyone be able to provide me with a link to the topic on this forum?

 

I could believe that because there was a long lag before he came up with it. His thing was ME as neurasthenia, then depression. When is was finally stated to be deconditioning I think that sounded more acceptable to authorities and less easy to dismiss as prejudice against patients. They could pretend they were trying to help patients who were misunderstanding them.

 

I am having another look at this document on dysregulation from BACME. I think some of it is problematic but I am warming to the general idea of framing ME as a dysregulation. Dysregulation is quite a good way to describe hypertension, rheumatoid arthritis, asthma, cancer, diabetes, you name it. ME/CFS could fit comfortably in that list. The crucial thing, as people have said, is to make the story honest and realistic and to try to get a good evidence base.

 

I had an email exchange with Sue Pemberton after I published this blog. She sent some comments on what I had written, along with a survey on patient outcomes and experiences that the Yorkshire Fatigue Clinic carried out. She didn't want me to share her email on a public forum. I'm not sure if the YFC survey is public; it might be on their website, but I haven't come across it yet.

I think we'd be in a slightly better position if the NHS clinics looked like the YFC. I hope BACME can be honest about their errors and start to change their ways.

Note that Sue is no longer a member of BACME. Her colleague, Dr Vikki McGeever, is a member of BACME and I believe she is keen that BACME rolls out this 'model'.

 

Having reviewed the BACME document, along with viewing a BACME webinar on dysregulation in ME/CFS, I can safely say that they are not using the term in this sense, and there is no mention of 'emotional dysregulation'.

We see the term dysregulation used all the time in biomedical ME/CFS research.