Review Does the effect of CBT for CFS (ME/CFS) vary by patient characteristics? A systematic review and individual patient data meta-analysis, 2023, Knoop

Yes I think that it is what happened: they recorded the data on PEM to assess the Fukuda criteria but I'm not sure what exact question they used. Based on the supplementary material it might have simply been: "do you have an increase of symptoms following exertion?"

 

It should also be noted that if this is indeed how PEM was evaluated, then the authors cannot infer from it that patients who met the Fukuda criteria with PEM also met the NICE and IOM criteria for PEM, because the latter define PEM more stringently:

Fukuda:

However, confusingly, the algorithm diagram in the Fukuda paper only requires “postexertion malaise” without a time requirement (Fig. 2).

IOM:

NICE 2021:

Further detailed in the glossary:

 

Thanks - sums it up nicely i.e. if you don't like the results, then change the scoring system --- that'll do!

 

For some reason a UK mental health charity, SANE, has shared this on Twitter.

 

Still only 4 likes after 19 hours, but maybe nobody's left on Twitter.

 

I'll try - but braindead - need links to CPET studies.

 

From: Dr. Marc-Alexander Fluks


Station: Medical Dialogues / YouTube
Date: November 7, 2023
WebTV:

https://www.youtube.com/watch?v=k-bcy6ZTOU4

Ref:
https://medicaldialogues.in/mdtv/ps...apy-beneficial-for-patients-with-mecfs-119893

Item: ME/CFS and CBT paper

---

Posting as a curiosity more than anything else. It's all very superficial.

 

Decided to reply to this -
[Replying to @CharitySANE and @KingsCollegeLon]
"Flogging a dead horse - NICE reviewed non-pharmaceutical interventions like CBT and found the evidence low/very low quality. If you actually believe in this then run some proper studies - i.e. objective outcome criteria like return to work."

https://twitter.com/user/status/1721529979937100108

 

Why do these people think that I give a rat's f*** about what bubble I fill in on a questionnaire?! What I care about is, how much time can I spend out of bed? Can I take a bath on my own? Can I clean my own home? Can I leave my home? Can I work? They believe this whole thing is a game with subscales and domains which they dutifully score and believe they are playing an honest game honestly. We, of course, are not playing that game. Nor are any of the guideline committees.

I sense this is part of a larger problem within society as whole: the use of metrics as a tool to make life better vs. the use of metrics as an end in and of itself because it's a quick hit of external validation (and career advancement)--especially if you get to create the metrics!

 

the only reference to CFS I can find on their website (I haven't searched very thoroughly) is this members blog:
My chronic fatigue journey

https://www.sane.org.uk/how-we-help/sane-community/your-blogs/my-chronic-fatigue-journey

curiously the link to the writers 'ongoing journey' takes you to a wordpress site that has been deleted by the author.

 

Probably for the best.

 

Patients with chronic fatigue syndrome benefit from cognitive behavior therapy

https://www.news-medical.net/news/2...-benefit-from-cognitive-behavior-therapy.aspx

you can rate the article (so far it has 1 star)

 

I can imagine similar studies coming in the next months/years from other well known BPS researcher. For example from the UK.

My hope is that we have some proper therapy and biomedical studies when a refresh of the guidelines are due…

 

did D4 come under this? "bias in measurement of the outcome"? I'm not clear but they all had "some concerns" in that domain. In the text, they seem to justify it as an inherent limitation that's impossible to avoid.

 

one of them (Prins, 2001) claimed to use Fukuda but it is Fukuda "except for the requirement of having four out of eight other symptoms besides fatigue" (paraphrasing). So it was actually Oxford, not fukuda at all.

 

Trial By Error: Yet More Stupidity from the Dutch CBT Fan Club

"As I pointed out last month when I reviewed a ridiculous study of “psychosomatic therapy” for “persistent somatic symptoms,” the Dutch psychologizers can’t seem to stop churning out poor-quality research purporting to support claims that their interventions are effective. Before the psychosomatic therapy study was the one investigating cognitive behavior therapy (CBT) for fatigue associated with long Covid, in which the authors declared success but failed to disclose that they had null results for their one objective measure—how far participants moved, as assessed by actigraphy.

Now we have another study of this ilk, this time a meta-analysis of individual patient data from a batch of studies of CBT for ME/CFS: “Does the effect of cognitive behavior therapy for chronic fatigue syndrome (ME/CFS) vary by patient characteristics? A systematic review and individual patient data meta-analysis.” The lead and senior authors are the same as for the recent study of CBT for long Covid –Dr Tanja Kuut and Professor Hans Knoop, both from the University of Amsterdam.

The new meta-analysis was published by Psychological Medicine, a journal that is essentially an in-house publication for the stream of shoddy papers emerging from members of the CBT/GET ideological brigades. (The Journal of Psychosomatic Research performs a similar function.) To make it more of an inside job, all eight studies included in the meta-analysis were done by investigators from the same group of researchers that includes Dr Kuut and Professor Knoop."

https://virology.ws/2023/11/11/trial-by-error-yet-more-stupidity-from-the-dutch-cbt-fanatics/

 

given PG s affiliation with this group,

https://twitter.com/user/status/1709127073694892455



what about the very out of date Cochrane review on CBT for CFS?

ah........but then there was this reanalysis...

Cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective. Re-analysis of a Cochrane review
Mark Vink1 and Alexandra Vink-Niese2
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498783/