Collection of evidence for the efficacy of CBT/GET

[Utsikt]

And a psychiatrist an ass. psychiatrist explaining why CBT is not supposed to be used for physical illness, but for e.g. agoraphobia etc. (false beliefs)

The BPS crowd believe that ME/CFS CBT stems from false beliefs in combination with deconditioning, so in their world, CBT is applicable.

What we need is to show that regardless of the cause, CBT is not effective.

 

[DMissa]

@DMissa, if you want rapid feedback on your draft, I'm sure there would be people willing to help here, and if you wanted it to be private you could get the feedback via a group PM, for example.

Suffice it to say that were I drafting anything in particular I would be seeking close patient involvement.

 

[Jonathan Edwards]

Correct, also why I have asked to be pointed towards details in particular.

Fair enough, although in a sense details are irrelevant. They re all open label studies with subjective outcomes so useless for providing a proof of efficacy. The more subtle thing is that they may nevertheless be adequate to provide proof of inefficacy!!

 

[Sean]

If you want an excellent summary of key problems with GET research organised under headings, Michiel Tack has done an excellent comment on the Cochrane review of exercise therapy.
https://www.cochranelibrary.com/cds....pub9/detailed-comment/en?messageId=266353165

Plus the earlier submissions to Cochrane from Robert Courtney, Tom Kindlon, and Graham McPhee.

 

[ME/CFS Skeptic]

Some more references:
Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials: an in-depth look at exercise therapy for chronic fatigue syndrome: Fatigue: Biomedicine, Health & Behavior: Vol 8, No 4

Assessment of the scientific rigour of randomized controlled trials on the effectiveness of cognitive behavioural therapy and graded exercise therapy for patients with myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review - PubMed

Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review - PubMed

The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering post-exertional malaise: a systematic review and narrative synthesis | Journal of Translational Medicine | Full Text

Harms of cognitive behaviour therapy designed to increase activity levels in chronic fatigue syndrome: questions remain - PubMed

But the main one is the reanalysis by Wilshire et al.
Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT - PubMed

 

[Turtle]

The BPS crowd believe that CBT stems from false beliefs in combination with deconditioning, so in their world, CBT is applicable.

What we need is to show that regardless of the cause, CBT is not effective.

CBT stems from false beliefs FULL STOP

 

[Utsikt]

CBT stems from false beliefs FULL STOP

I only noticed that typo now! I intended to write ME/CFS but my brainfog tricked me at some point. I’ve edited the original comment.

 

[Kitty]

Can anyone remember anything about the risks of CBT/GET? It's part of the original question, but I can't recall it being looked at (though with my memory, that doesn't mean much).

If it hasn't been looked at, then given the number of complaints about harm it's quite telling.

 

[Peter T]

Can anyone remember anything about the risks of CBT/GET? It's part of the original question, but I can't recall it being looked at (though with my memory, that doesn't mean much).

If it hasn't been looked at, then given the number of complaints about harm it's quite telling.

There was the survey done for the NICE ME/CFS Guidelines review, but I can never remember where it was published.

 

[Utsikt]

There was the survey done for the NICE ME/CFS Guidelines review, but I can never remember where it was published.

The Norwegian ME Association has a survey that shows that GET was the intervention most strongly associated with deterioration by patients. Curative CBT was also towards the bottom.

 

[Nightsong]

There was the survey done for the NICE ME/CFS Guidelines review, but I can never remember where it was published.

Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes

Submitted by Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS), Oxford Brookes University, 27th February 2019

https://meassociation.org.uk/wp-con...nd-GET-Final-Consolidated-Report-03.04.19.pdf

 

[Peter T]

Thank you

 

[Nightsong]

For completeness' sake, a few additional resources that may or may not be of use. (Excluding those that have already been posted.)

Spoiler: Vink papers

Vink M, Vink-Niese A. The draft updated NICE guidance for ME/CFS highlights the unreliability of subjective outcome measures in non-blinded trials. Journal of Health Psychology. January 2021

The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS, 2022, Vink and Vink-Niese

Using Exercise Therapy for [LC] Without Screening for Post-Exertional Symptom Exacerbation Potentially Increases the Risks for Patients.., 2024, Vink+

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

Spoiler: Other papers

‘PACE-Gate’: When clinical trial evidence meets open data access (Geraghty, 2016)

The PACE trial missteps on pacing and patient selection (Jason, 2017)

Checking our blind spots: current status of research evidence summaries in ME/CFS (Davenport et al., 2019)

When PACE-Gate Meets Sample Size (Sepulveda, 2025)

Spoiler: Miscellaneous

Xiao, Davis et al online survey, significant % of those who tried GET reported worsening

The original Trial by Error blog posts: part one, part two, (full series).

AfME's "Severely neglected" survey of their members ca March 2001 ~50% reported worsening with GET

AHRQ 219 (Addendum) (AHRQ, 2016 addendum to 2014 ETRA)

PACE Trial - Critical Appraisal (slides) (Lee, 2017)

 

[Robert 1973]

So on efficacy, I'd focus on the trial design issues: namely, that in open-label trials, all subjective outcomes suggesting success can simply go in the bin.

Fair enough, although in a sense details are irrelevant. They re all open label studies with subjective outcomes so useless for providing a proof of efficacy.

I just want to highlight that the problem with the subjective outcomes in PACE etc. is that they are not corroborated by improvement in objective outcomes. I’m pretty sure Jonathan makes this point in his JHP paper and/or testimony to NICE. If improvements in subjective outcomes in unblinded trials were supported by corresponding improvements in objective outcomes, that would tell us something useful about efficacy.

When there is improvement in subjective outcomes in unblinded trials but no significant improvement in objective measures (as in PACE etc) that is a good indication that reported subjective improvements may be due to bias and that the intervention may be ineffective.

But the main one is the reanalysis by Wilshire et al.
Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT - PubMed

Maybe better to use the BMC Psychology link as that includes the illuminating correspondence between the authors of the 2 papers: https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3

 

[rvallee]

I just want to highlight that the problem with the subjective outcomes in PACE etc. is that they are not corroborated by improvement in objective outcomes. I’m pretty sure Jonathan makes this point in his JHP paper and/or testimony to NICE. If improvements in subjective outcomes in unblinded trials were supported by corresponding improvements in objective outcomes, that would tell us something useful about efficacy.

Has anyone actually asked the promoters of this mindset how that's any different from any other alternative medicine? How this is precisely one of the primary arguments for why alternative medicine can best be described as "medicine that does not work"?

Health care isn't supposed to be about "making people feel a bit better", and yet all appearances in the recent decade suggest that this has become the primary goal for anything that isn't dealing with a specific disease process, and even then the woo is creeping everywhere.

Which is exactly how the US ended up with an antivaccine fraud who thinks raw milk and weight lifting is all that's needed to be healthy, and a likely Surgeon-general who is a wellness influencer who failed medical school. The slippery slope has been greased up way too heavily, it's all related.

Not that I expect a serious answer, but it's the freaking core argument for what differentiates alternative from scientific medicine, how every single health pseudoscience quack out there can make the exact same boasts, speak to their 'clinical' experience and have no trouble finding clients who will say exactly the same.

Because it's only a matter of time before the line simply ceases to exist if they keep degrading the standards down to that. If we haven't already crossed that line, and it's just a matter of time before reality asserts itself. Which it may already have, it's not as if health care systems are built to notice something like it. If anything, they are intentionally blinded to it. Just like they've been completely blind to LC arriving, coming, and now having been memory-holed in the same trash dump they built for us.

 

[MSEsperanza]

Thank you @DMissa for doing that and asking us.

Also thank you to everyone who already helped.

I don't have anything to add to that collection, just in case you aren't aware already of the many creative pseudo-rebuttals of forum members' assessment of the evidence / criticism of the unreliable trial methodology most commonly used in this field --
there's a collection of some of the commonest pseudo-rebuttals and short arguments to reject these here.

The pseudo-rebuttals include this gem (machine translation from German) :

"The fact that many symptoms can only be recorded subjectively is also not a disadvantage because ultimately only the patient can evaluate the success of his or her own treatment. If a person learns to rate his or her own symptoms as less severe or threatening, then this can be seen as a genuine relief, since here too it is the subjective patient perspective alone that counts. Overall, therefore, no need for change to the methods paper is seen on this point." (*)

(*) IQWiG, Documentation and evaluation of comments on the Draft of the General Methods 6.1 (in German), https://www.iqwig.de/methoden/allgemeine-methoden_dwa-entwurf-fuer-version-6-1_v1-0.pdf

From the discussion thread on bias due to a lack of blinding here.


Edited for clarity.

 

[Sly Saint]

see also tag 'harms' for many threads (not all are ME/CFS).