Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with [CFS], 2021, Crawley et al

"An RCT needs to solve issues around randomisation and timing of the intervention."
Jonathan Edwards said:
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?
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Yes, it seems nonsensical. How can a RCT solve the problems of randomisation, when randomisation is a component part of a RCT itself? I presume they are trying to say that trial investigators would need to overcome any reluctance on the part of potential participants to be randomised, but the wording is very clunky. And surely this is an issue that most RCT investigators have to deal with, so why is it a special issue worthy of mention here? Perhaps I'm just being too pedantic.
 
something peculiar;

this is the published ie pubmed version of the paper
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/

note the 'Is it time to act?' no longer there.

this is the entry in the bmj
https://bmjpaedsopen.bmj.com/content/5/1/e001139

http://dx.doi.org/10.1136/bmjpo-2021-001139


then there is this in BMJ

1188 Is it time to act? A qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with chronic fatigue syndrome

which I assumed was the same paper but it isn't or at least some of it is different

Abstract
Background Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is severely disabling and relatively common. Over 15% of children do not recover by 12 months. Cognitive Behavioural Therapy for fatigue (CBT-f) is one of the only approaches with consistent evidence for improving function and quality of life. Acceptance and Commitment Therapy (ACT) is a suggested alternative therapy. It is effective in paediatric chronic pain and functional syndromes, but has not yet been trialled in paediatric CFS/ME.
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https://adc.bmj.com/content/106/Suppl_1/A264

http://dx.doi.org/10.1136/archdischild-2021-rcpch.460
the claim of recovery ,as used elsewhere, references CBT-f .......

something odd going on?

@dave30th
 
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The pubmed link above gives a DOI of 10.1136/bmjpo-2021-001139

The BMJ link gives a DOI of http://dx.doi.org/10.1136/archdischild-2021-rcpch.460

According to wikipedia

A digital object identifier (DOI) is a persistent identifier or handle used to uniquely identify various objects, standardized by the International Organization for Standardization (ISO).[1] DOIs are an implementation of the Handle System.[2][3] They are widely used to identify academic, professional, and government information, such as journal articles, research reports, data sets, and official publications. DOIs have also been used to identify other types of information resources, such as commercial videos.
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So, this suggests to me that since the articles/papers have different DOIs the articles/papers ought to be different. (I haven't actually read them to find out.)
 
The 1188 paper is an entry under Paediatric Mental Health Association
pdf here https://adc.bmj.com/content/archdischild/106/Suppl_1/A264.full.pdf


I've read a bit of the
Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with chronic fatigue syndrome

http://dx.doi.org/10.1136/bmjpo-2021-001139

and in the introduction it says
"
Introduction
Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is relatively common (prevalence 0.55% across community, primary care and hospital populations)1 and can be severely disabling with persistent fatigue, chronic pain, postural instability and cognitive dysfunction.2 It negatively impacts on children’s emotional,3–5 educational6 and social functioning.7 Despite specialist treatments (cognitive behavioural therapy-for-fatigue (CBT-f), activity management (AM) and graded exercise therapy (GET)), at least 15% of children with CFS/ME remain symptomatic after one year of treatment.8 Alternative treatment approaches are needed."
Better than CBT-f
Two participants who had already received ACT thought it was more acceptable than CBT-f because it was ‘more gentle and kinder’ (ID-p), which was important for managing pain and fatigue. One adolescent found it ‘impossible’ (ID-a) to challenge thoughts in CBT-f because of the cognitive effort required, so preferred the ‘values’ and ‘person-centred’ focus in ACT.
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not sure why the 'treatments' (ie CBT-f, AM, and GET) were not mentioned in the abstract.
 
Sly Saint said:
preprint
Is it time to ACT? A qualitative study of the acceptability and feasibility of Acceptance and Commitment Therapy for adolescents with Chronic Fatigue Syndrome

View ORCID ProfilePhilippa Clery, Jennifer Starbuck, Amanda Laffan, View ORCID ProfileRoxanne Parslow, View ORCID ProfileCatherine Linney, View ORCID ProfileJamie Leveret, View ORCID ProfileEsther Crawley
https://www.medrxiv.org/content/10.1101/2021.04.20.21255804v1
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More sophism then. Bring in psychological therapy based on the claim it 'recovers' people by using false-beliefs CBT then when that is debunked as being a type of conversion therapy for an illness that is real claim that psychological therapy is still due based on the terrible, damaging therapy that was used previously being 'switched for another'.

So that's OK then

Not proven that there is a psychological component and I'm pretty sure that directing anything only at the child rather than informing the family to be more understanding is your typical medicalisation of a situation you've allowed to be created by not stepping in. And worse put a label on kids so if there is a difference in opinion that does tend to end up with others assuming 'it must be you' vs if they had a programme that said those around them should be understanding of the condiiton. That includes schools.

This seems an incredibly niche need, for only some in some very specific circumstances, and instead seems to being not just sold but put across like it is a 'done deal' that 'of course' it should be offered to all.

Being 'more acceptable' in a situation where people can't really turn something down should be read into v carefully against whether anything lower was something people were free to answer on.

So scary people would want to psychologise kids. For the sake of it. When they are poorly and have enough to deal with. This sort of thing should really only be being done on a precise diagnosis + treatment to match the cause basis - not the roll out mass programmes nonsense in my opinion, and it is time that the country began to push back on these mass courses. It's like treating trauma whilst not feeding into getting the stigma changed so that it no longer happens annoys me too, worse when someone themselves has been actually creating these misconceptions (then pretending to be saviour).

Reading some of these CBT/ACT type courses (as they appear on the ground and in pdfs on various sites) they seem to also be a way that pushes the idea that those who are inconsiderate push their ideas as 'norms' onto what used to be the norm of people being considerate of others. You know like the 'don't be sensitive' 'everyone should be tolerant and put up and shut up' 'don't talk about your problems, pretend to be positive' elbows-out gang. For many situations and conditions these are not the correct messages as far as I'm aware for helping mental health, people often need to talk - and these are not being offered as alternatives or matched by case so I'm suspicious of what they are sold under.

It seems about normalisation, but in the vision of slightly more hard-nosed people, rather than helping health or happiness - the difference between which is bordering on sinister when you think about roll-out. There is no connection between 'certain kind of normal' as certain people see it and being healthier or happier that is all just in the opinion of individuals who tend to claim that about themselves. And if everyone runs about being hard to each other and not connecting properly I highly doubt society will get mentally more healthy.

I don't like what might be advertently or inadvertently being moved the dial on under the guise of these things pretending to help or to just be about those who they might help - the things they chuck out these days aren't carefully crafted on detailed understanding of something like catastrophic thinking, they tend to be certain type of individuals personal 'norms' as they see it. That should not be melding with 'mind reprogramming' courses or techniques delivered under a pretence of anything. I think the remit is being pushed significantly.
 
Trial By Error: If Professor Crawley’s ACT Study Was Peer Reviewed, Where Are the Peer Reviews?

"Yesterday, I wrote a blog about a just-published but already out-dated conference abstract from a team led by Professor Esther Crawley, Bristol University’s methodologically and ethically challenged pediatrician and grant magnet. After I tweeted about it, I heard from Naomi Harvey, a zoologist, who said she’d written to BJPsychOpen about the abstract’s flaws. Hopefully, she—and any others who alerted the journal–will receive an adequate response.

My exchange with Dr Harvey prompted me to look again at the 2021 study (Clery et al) from which the conference abstract seems to have been drawn. Clery et al, published by BMJ Paediatrics Open, was called “Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with chronic fatigue syndrome.” (BMJ Paediatrics Open describes itself as “an official journal of the Royal College of Paediatrics and Child Health.” Just to be clear; the RCPCH is a trade union that, like any trade union, promotes and protects the financial, political and professional interests of its members.)

The timing of the publication of Clery et al is curious. It was posted in early October of last year. The article’s second reference is to a 2007 NICE guidance on what the agency then called CFS/ME. The link for the 2007 guidance, according to the reference, was accessed in March, 2021. That was after NICE published the draft of the new ME/CFS guidance, which happened in November, 2020."

https://www.virology.ws/2022/07/12/...was-peer-reviewed-where-are-the-peer-reviews/
 
dave30th said:
https://www.virology.ws/2022/07/13/...about-missing-peer-reviews-for-crawley-paper/
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That "exception" looks a lot like a loophole to me. They do open peer reviews, unless the peer reviewers don't agree to it by way of a 3rd party? Sounds like an easy way around open peer review to me.

This is exactly like the zero tolerance policy that one of Crawley's papers did not respect (pre-registration? can't remember) and turns out BMJ don't care about that. The credibility of the entire process is based on the fact that it's a rigorous process. Turns out it's basically this when there is a need to sneak something through it:

mSHi8.jpeg
 
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