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.
 
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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.
 
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.
 
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.
 
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.
 
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.
 
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!!
 
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