The PACE Trial’s GET Manual for Therapists Exposes the Fixed Incremental Nature of Graded Exercise Therapy for ME/CFS, 2025, Vink et al

Nightsong

Nightsong

Senior Member (Voting Rights)
Abstract
The British National Institute for Health and Care Excellence (NICE) published its updated guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in October 2021. NICE concluded, after an extensive review of the literature, that graded exercise therapy (GET) is harmful and should not be used, and that cognitive behavioural therapy (CBT) is only an adjunctive and not a curative treatment. An article by White et al., which is written by 51 researchers, claims that there are eight anomalies in the review process and the interpretation of the evidence by NICE. In this article, we reviewed the evidence they used to support their claims. Their three most important claims are that NICE redefined the disease, that CBT and GET are effective, and that fixed incremental increases are not part of GET.

However, our analysis shows that the disease was not redefined by NICE. Instead, it was redefined in the 1990s by a group of doctors, including a number of authors of White et al., when they erased the main characteristic of the disease (an abnormally delayed muscle recovery after trivial exertion, which, over the years, has evolved into post-exertional malaise) and replaced it with chronic disabling severe fatigue. Their own studies show that CBT and GET do not lead to a substantial improvement of the quality-of-life scores or a reduction in CFS symptom count, nor do they lead to objective improvement. Also, both treatments have a negative instead of a positive effect on work and disability status.

Moreover, a recent systematic review, which included one of the authors of White et al., showed that ME/CFS patients remain severely disabled after treatment with CBT. Our analysis of, for example, the PACE trial’s GET manual for therapists exposes the fixed incremental nature of GET. Why the authors are not aware of that is unclear because eight of them were involved in the PACE trial. Three of them were centre leaders and its principal investigators, four others were also centre leaders, and another one was one of the three independent safety assessors of the trial. Moreover, many of these eight authors wrote, or were involved in writing, this manual.

In conclusion, our analysis shows that the arguments that are used to claim that there are eight anomalies in the review process and the interpretation of the evidence by NICE are anomalous and highlight the absence of evidence for the claims that are made. Furthermore, our analysis not only exposes the fixed incremental nature of GET, but also of CBT for ME/CFS.

Link | PDF (Life, April 2025, open access)
 
According to a systematic review, 51% of long COVID patients fulfil ME/CFS criteria [8]. Put differently, 51% of people with long COVID have ME/CFS which has been triggered by SARS-CoV-2. If White et al. are right, then there would be effective treatments for those 51% (more than 200 million patients), as well as the estimated 17 to 24 million people with ME/CFS which were already afflicted before the SARS-CoV-2 epidemic [9]. If, on the other hand, NICE is right, then that would mean that there are no effective treatments for around 420 million people with long COVID and ME/CFS. This not only constitutes a health crisis for the people involved, but it also constitutes an economic crisis because most of those patients are between 20 and 50 and in the prime of their economic and productive life. The economic costs of long COVID disabling a previously productive workforce are significant. For example, estimates place the total US economic cost of long COVID in the range of USD 140 to USD 600 billion per year [10]. This makes it even more important to find out if CBT and GET are effective treatments, as claimed by White et al., or if they do not lead to improvement and recovery, as concluded by NICE. If the latter is the case, then there is an urgent need for causative effective treatments approaches for the more than 400 million people with post-infectious diseases [11].
Click to expand...
Reference 8 about the prevalence of ME/CFS among LC patients has a lot of flaws according to our thread on it, but the points about many people suffering, a large economic impact and the need for treatments still stand.
https://www.s4me.info/threads/the-p...ew-and-meta-analysis-2024-dehlia-et-al.40426/
 
I notice recently the Long Covid clinics haved moved onto only increasing exercise when baseline improves, but they are still treating ME from COVID with exercise. It's still GET really I don't think the fixed increment is a key part of the premise, exercise being curative in any form is wrong,
 
The paper said:
NICE concluded, after an extensive review of the literature, that graded exercise therapy (GET) is harmful and should not be used, and that cognitive behavioural therapy (CBT) is only an adjunctive and not a curative treatment
Click to expand...
The quacks were exposed as liars when they lost their shit about CBT being defined explicitly in the guideline as supportive.

For years, in response to them pushing CBT as curative and people pushing back, they said and repeated many times how they only mean it as supportive, and many times made the argument that it's also offered for fatigue in cancer patients (although very likely to a tiny %) and no one pushes back against this (because it's a trivial %, and it's not even a secondary treatment, it's tertiary support). Then when the guideline explicitly defined it according to what they have been saying for years, they reacted in outrage, explicitly calling what they had been claiming for years wrong.

They defined it in a way that is false. They always meant curative, but they lied because they are allowed to. Then when their bluff was called, they reacted with fury, insisting that framing it as purely supportive was wrong. When it was defined the way they have been lying for years.

They are liars and frauds. Their lie was exposed, and hardly anyone in the profession care. Which says, more than anything, how the institutions of the profession are just as much to blame for this failure. These charlatans have been allowed to wreck millions of lives with the full support of all the major institutions of medicine. Those systems have failed us, and continue to do so.

There is something to be made of their lie about fixed increments, but ultimately exposing them as liars doesn't change anything. Their peers know, they're fine with lies and pseudoscience, for an illness they consider a pseudoillness, based on lies and pseudoscience. The bigger point is that fixed increments or not makes no difference anyway. Those programs simply do not work any better than any random combination of various alternative medicine treatments, or even nothing at all. This has been proven again and again, and all this proves is that the profession can be entirely indifferent to outcomes based on entirely arbitrary nonsense pseudoscience.
 
rvallee said:
The quacks were exposed as liars when they lost their shit about CBT being defined explicitly in the guideline as supportive.

For years, in response to them pushing CBT as curative and people pushing back, they said and repeated many times how they only mean it as supportive, and many times made the argument that it's also offered for fatigue in cancer patients (although very likely to a tiny %) and no one pushes back against this (because it's a trivial %, and it's not even a secondary treatment, it's tertiary support). Then when the guideline explicitly defined it according to what they have been saying for years, they reacted in outrage, explicitly calling what they had been claiming for years wrong.

They defined it in a way that is false. They always meant curative, but they lied because they are allowed to. Then when their bluff was called, they reacted with fury, insisting that framing it as purely supportive was wrong. When it was defined the way they have been lying for years.

They are liars and frauds. Their lie was exposed, and hardly anyone in the profession care. Which says, more than anything, how the institutions of the profession are just as much to blame for this failure. These charlatans have been allowed to wreck millions of lives with the full support of all the major institutions of medicine. Those systems have failed us, and continue to do so.

There is something to be made of their lie about fixed increments, but ultimately exposing them as liars doesn't change anything. Their peers know, they're fine with lies and pseudoscience, for an illness they consider a pseudoillness, based on lies and pseudoscience. The bigger point is that fixed increments or not makes no difference anyway. Those programs simply do not work any better than any random combination of various alternative medicine treatments, or even nothing at all. This has been proven again and again, and all this proves is that the profession can be entirely indifferent to outcomes based on entirely arbitrary nonsense pseudoscience.
Click to expand...

Will those responsible, ever be held accountable?
 
You must log in or register to reply here.
Back
Top Bottom