Is it time to ACT? qualitative study of acceptability, feasibility of Acceptance and Commitment Therapy for adolescents with CFS, 2021, Crawley et al

Jonsjö's supervisor Gunnar Olsson talked about ACT for ME in a webinar recently, mentioned briefly that they have realised along the way that their usual ACT model isn't suitable for pwME(!):

https://www.s4me.info/threads/swede...-act-for-me-hosted-by-bragée-me-center.20149/

My impression of what Olsson said in the webinar is that the ACT for ME model they are using today is very different from the one described in their study protocols (see threads linked in the webinar post for more details about them).

 

I think this is @Jonathan Edwards comment - the (dud) meal ticket lovingly polished -- how much money have they got certainly £millions - £10 million in total? Plus that provides the Government with an excuse/response - funded £xmillion -- children --- all the usual buzz words.

I wonder if we could link the outcome of the NICE review, which considered the evidence to be poor, and the fact that this research is publicly funded - I'm in te UK and I for 1 object.

@Trish maybe worth writing to the public accounts committee outlining that NICE have labelled these studies as poor and asking is this just jobs for the boys (in-folks getting public money). Also, have a go at the sponsoring body [anyone know who this is?] MRC or Government Departments are likely the funders.

An MP has offered to write a question so may try to link all of this to the wider public perception of sleaze (in-folks getting public money for poor quality studies) - in my view at least it is.

 

From memory, I think 3 MPs in the Committee for Science and Technology in the last Parliament tried something when discussing ‘Research Integrity’. (Supportive MPs were Norman Lamb (Chair), Carol Monaghan & Darren Jones)


Also from memory, Meg Hillier, Chair of the Public Accounts Committee was sympathetic when GET was previously raised at Committee level, but was hampered by lack of evidence?

Something could gain more traction now that NICE can be quoted that the studies were ‘poor or very poor’.

 

Oral Evidence 8 May 2018

Questions raised by Carol Monaghan with Sir Patrick Vallance about the release of data on the PACE trial

http://data.parliament.uk/writtenev...-committee/research-integrity/oral/82537.html

Then, another member of the Committee asks (my bolding):

“ Vicky Ford: Again, this is just an observation. When Dr Goldacre was here, he was very focused on the point that all trials needed to report their results —not necessarily the raw, granular data, but the results—especially if trials had not shown positive benefits from treatments, so that that was known. I want to hear from the Minister whether he is backing the campaign to make sure that all trialresults become known. The suggestion was that, at a minimum, people who routinely do not publish their trial results should find it more challenging to receive public funding for future trials.”

 

I managed to edit my comment which has now been published below the preprint: https://www.medrxiv.org/content/10.1101/2021.04.20.21255804v1

I’m minded to submit something similar to the journal when the final paper is published, assuming it’s much the same. If someone could tag me when it’s published that would be helpful in case I miss it.

 

Just checked, no public response from the authors so far.

 

now published
Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with chronic fatigue syndrome

https://pubmed.ncbi.nlm.nih.gov/34660913/

 

And it never (!) will be!

 

We will see many papers in progress that will be immediately out-of-date the minute they're published because of their references to "evidence-based" treatments (ie GET and CBT). Peer reviewers should immediately flag this issue, although most of them won't because they all mostly believe the exact same thing as the authors of these nonsensical papers. (Added): What will be most interesting to see is if anything changes assuming NICE publishes the guideline--will this bullshit still receive funding from UK agencies?

 

Reading the abstract, it seems randomisation would be a problem because children didn't want to be randomised.

So, once again, that suggests people are a) either desperate for any treatment or b) desperate for the treatment that is currently being hyped because it's being hyped.

 

ACT always sounds to me like "suck it up and go away" therapy.

 

Better do this 28x more times just to be sure, how can we really know if something commonly used is feasible? After all, this exact study has only been done many dozens of times so far.

What we really need to find out, though, is whether it is feasible for participants to drink a glass of water and evaluate how fresh it is. Maybe it's unfeasible and this would revolutionize our understanding of the relationship between the body and water. Better try it no less than 44 times.

In my working days I worked a lot on BS marketing stuff, websites built specifically for a campaign that just gets thrown away once the date has passed. And it felt pointless, unproductive, but compared to this, I was basically doing something massively productive and rewarding.

 

Has anyone any idea what this sentence is supposed to mean and how an intelligent professor can allow their name to be put on a paper that includes it?

I cannot think of any particular issues around randomisation, other than needing a randomised set of allocations. And what has it to do with the actual treatment?

 

I usually defer to the famous Watergate quote, it fully applies: "the truth is, these guys are not very bright guys and things got out of hand". So far it works 100% of the time.

I don't think memorizing textbooks fully qualifies as intelligence, though it can mimic it convincingly. It takes especially dull minds to mindlessly repeat the same nonsense for decades, anyone actually smart would be bored to death right away. That's the giveaway, that they aren't even bored of this yet.

 

When i asked questions about Professor Crawley's questionable work, the Bristol University vice chancellor filed multiple complaints with Berkeley's chancellor about my "behaviour." So ask questions about her work at your peril!

 

They know about my behaviour at UCL.
And Crawley was once one of our trainees!
But I realise that two premises don't necessarily make a syllogism.