United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

[Sean]

At what point does this become straight fraud? Not to mention cruelty.

I don’t understand how it would be possible to construct a theory where more activity would lead to an improvement, unless the lack of activity (deconditioning or activity avoidance) was a part of the issue.

Exactly. It simply does not work without invoking some version of deconditioning, physical or psychological.

 

[Wyva]

If anyone are doing a deep read of it, I’d be very interested to read their reasoning for why pacing up might produce improvements.

Especially if it involves something other than activity avoidance theories - i.e. that the absence of regular activity is causing the symptoms experienced when being active.

I don’t understand how it would be possible to construct a theory where more activity would lead to an improvement, unless the lack of activity (deconditioning or activity avoidance) was a part of the issue.

Not BACME, but there was this physiotherapist from the University of Debrecen who wanted to recruit people from my group for a pacing up kind of study. It looked eerily similar to what we see here, with emphasizing that pacing up is not GET and rejecting the deconditioning theory. I asked her what the reasoning behind her approach was, what she believes drives the disease then if she thinks this will help. She just ignored that question completely.

 

[Amw66]

This, PROMS and an NHS app.
What could possibly go wrong ?

 

[hotblack]

They have also adopted the term «pacing up» and are outright defending it

Wow. That chart and defence is quite something. That they’ve gone to such lengths to me is a clear sign of bad faith. This is an ideological and political document not a clinical one.

Nice to see them finally admit some of the problems with GET of course!

They’re still slipping in early life trauma as a predisposing factor, with equal billing to genetic and environmental factors, despite there being no evidence of this.

There’s the pseudoscience of dysregulation and rebalancing various systems.

And a section on rehabilitation being a human right.

This is going to take some going through. It’s very long but does not look good at all. Although maybe seeing it written down like this some real clinicians will see it for what it is. But sadly it could be bad news for others. That the government have still talked about working with and consulting an organisation like this is a real concern.

 

[Peter T]

Pacing up is an approach that is central to rehabilitation. I suspect it is so basic a building block of most therapists and clinicians’ understanding that it rarely occurs to any that it needs any justification. Central to this is establishing what the patient is able to do then encouraging practice at just below the current limit in the hope that they will be able to do more. Then as long as they seem able to improve you continue doing this.

This sort of works with something like a stroke where you are primarily dealing with a stable neurology following a one off acute event. You get improvement, though not asking why, until you don’t. In such as a stroke rehab unit, as long as you get improvement rehab continues, until the multidisciplinary team agrees improvement is levelling off, when you discharge. However, unfortunately ME/CFS seems to involve some form of ongoing process, so though initially you may have the illusion that pacing up works, ultimately it for most can trigger deterioration longer term or even a major relapse.

I haven’t read any of the more recent BACME material, but don’t they in part subscribe to the idea of central sensitisation which is different to both deconditioning and fear avoidance. However seeking to desensitise in practice produces an intervention very similar to the previous models. I guess they are seeing ME/CFS as exercise intolerance rather than exercise phobia, which can be overcome by gradual desensitisation.

 

[Jonathan Edwards]

Wow. That chart and defence is quite something. That they’ve gone to such lengths to me is a clear sign of bad faith. This is an ideological and political document not a clinical one.

If anyone wanted a defining example of the word disingenuous for the Oxford English Dictionary this would be it.

They seem to have missed the fact that pacing up has no evidence base in trials whatever.
The basing in lived experience is pure manipulation.

The charities need to make up their minds where they stand on this.
It would be something worth @dave30th having a look at too.

 

[hotblack]

This from the section “Overview of the Therapy” sets out their stall. I’m pretty gobsmacked tbh. This is the sort of justification people turn to when they don’t have evidence. “It may not work but it is my right!”

As the remit of the guide is active therapy the rationale for the rehabilitation approach is included. The World Health Organisation has defined rehabilitation as:
“A process aimed at enabling people to reach and maintain their optimal
physical, sensory, intellectual, psychological and social functional levels.
Rehabilitation provides people with the tools they need to attain
independence and self-determination.”
The World Health Organisation considers that access to rehabilitation is a human right. The WHO “optimising” approach to rehabilitation can form part of the dialogue with the person with ME/CFS when forging a therapeutic alliance.

 

[Jonathan Edwards]

This from the section “Overview of the Therapy” sets out their stall. I’m pretty gobsmacked tbh. This is the sort of justification people turn to when they don’t have evidence. “It may not work but it is my right!”

The epitome of the British paternalistic health care model, and probably dreamt up by women!!

 

[bobbler]

This from the section “Overview of the Therapy” sets out their stall. I’m pretty gobsmacked tbh. This is the sort of justification people turn to when they don’t have evidence. “It may not work but it is my right!”

I need to find the link to the paper that I think included Sharpe as an author and maybe Chalder that I think was published around Dec 2021 onwards as it was just after the new guideline was released and cclaimed, immediately at that point that the old guideline ie GET ‘was only ever rehab’

Because in my mind that + this then four years on shows pure intention to offer the exact same thing that had just been debunked as having evidence of working and not harming

And even blows the idea that a new label has been put in it because straight away at that point they were retrospectively claiming the old was ‘only ever rehab’ and this ‘new in name only’ is surely the same rehab just with different names.

It is BS that there is anything new that would mean this doesn’t harm other than slurs of trauma that already were being made before and should - if they weren’t lying at the implementation group - have stopped as part of the claim that spreading tropes that were untrue and in evidence would cease

I’m shocked by the gall that they think they’ve the right clearly to keep being entitled to harm patients to make money/careers/whatever but it clearly isn’t to or for the patients benefit. So the term human right for patients is puzzling - human right to be physically and mentally harmed by slurs, tropes and harmful treatment for the advantage of those selling it - well it is a contradiction in logic because how can someone have a human right to being harmed?

 

[Trish]

I haven't had a chance to read the document yet but I wanted to comment on the table they produced. It is the same as one Peter Gladwell used in a private email correspondence with me. He seemed very proud of it, as if he was providing definitive proof that pacing up is NICE compliant.

Skimming the intros of each section, it seem like a very invasive and infantilising approach to care for pwME/CFS.

They have also adopted the term «pacing up» and are outright defending it and claiming it’s not based on a deconditioning model of ME/CFS, and therefore not a version of GET, and therefore is NICE-compliant:

View attachment 29268

For context, this is what NG206 says, in addition to the definition of GET:

Do not offer people with ME/CFS:

• any therapy based on physical activity or exercise as a cure for ME/CFS
• generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
• any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
• physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.

This is 1.11.13:

If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree a programme with them that involves the following and review it regularly:

• establishing their physical activity baseline at a level that does not worsen their symptoms
• initially reducing physical activity to be below their baseline level
• maintaining this successfully for a period of time before attempting to increase it
• making flexible adjustments to their physical activity (up or down as needed)
• to help them gradually improve their physical abilities while staying within their energy limits
• recognising a flare-up or relapse early and outlining how to manage it.

———

So it seems like the NICE compromise technically might make pacing up NICE compliant.

I tried to explain to him that it's not NICE compliant, as NICE specifically says increases should always be kept within a patient's current limits, and spells out in the section quoted that any exercise program should start with:

• initially reducing physical activity to be below their baseline level
• maintaining this successfully for a period of time before attempting to increase it

in other words, NICE specifies staying within baseline, not trying to increase it with added exercise.

 

[Jonathan Edwards]

I think trying to argue that this is not NICE compliant is likely to end up boxed in a corner.
NICE fudged this. The wording provided allows almost anything.

I think this should be resisted on the much simpler argument that there is no reliable evidence base for it. If this policy had been considered systematically by NICE alongside GET and CBT it would have been thrown out as unevidenced. There aren't even any trials.

I think we should forget NICE compliance. The charities need to be challenged on their position in terms of absence of reliable evidence.

 

[bobbler]

I need to find the link to the paper that I think included Sharpe as an author and maybe Chalder that I think was published around Dec 2021 onwards as it was just after the new guideline was released and cclaimed, immediately at that point that the old guideline ie GET ‘was only ever rehab’

Because in my mind that + this then four years on shows pure intention to offer the exact same thing that had just been debunked as having evidence of working and not harming

And even blows the idea that a new label has been put in it because straight away at that point they were retrospectively claiming the old was ‘only ever rehab’ and this ‘new in name only’ is surely the same rehab just with different names.

It is BS that there is anything new that would mean this doesn’t harm other than slurs of trauma that already were being made before and should - if they weren’t lying at the implementation group - have stopped as part of the claim that spreading tropes that were untrue and in evidence would cease

I’m shocked by the gall that they think they’ve the right clearly to keep being entitled to harm patients to make money/careers/whatever but it clearly isn’t to or for the patients benefit. So the term human right for patients is puzzling - human right to be physically and mentally harmed by slurs, tropes and harmful treatment for the advantage of those selling it - well it is a contradiction in logic because how can someone have a human right to being harmed?

In fact , as they’ve mentioned the term ‘human right’ I think that we probably do need to pull up and study the actual thing which really does relate to human rights:

The declaration of Helsinki

Which relates to ethics in research for a reason

Because a lot of terrible harm had been done in the name of and claims of ‘research’ to humanity beings.

This ‘let’s just relabel doing exactly the same things to these people who were harmed by the last times we did this to them, and worse make sure we reduce monitoring of harm even further - as if the only lesson they learned is to silence us further than just the removal of yellow card we had due to behavioural/therapist-delivered treatments getting a ‘free pass from basic safety regulations’ so that they this time will hide even more any resulting deterioration

We’ll surely it IS basically at best a giant experiment but with predictable results because as per Einstein you are repeating the same thing and claiming the results will be different

I would actually if I’m ever up to it start pulling out that declaration to see the facts on the actual human rights front … given they’ve dared to use this term like it’s some sort of sales pitch buzz word they can reverse the meaning of and it isn’t actually one of the few things with truly specified meaning and documents.