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

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Sly Saint, Apr 25, 2021.

  1. Barry

    Barry Senior Member (Voting Rights)

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    "An RCT needs to solve issues around randomisation and timing of the intervention."
    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.
     
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    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

    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
     
    Last edited: Jul 3, 2022
  3. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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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

    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.)
     
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    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."
    not sure why the 'treatments' (ie CBT-f, AM, and GET) were not mentioned in the abstract.
     
  5. bobbler

    bobbler Senior Member (Voting Rights)

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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.
     
    Lou B Lou, Sean, Amw66 and 1 other person like this.
  6. Andy

    Andy Committee Member

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    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/
     
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  7. Trish

    Trish Moderator Staff Member

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    Thanks @dave30th. Will you be writing to the journal to ask them to publish the peer review information?
     
  8. dave30th

    dave30th Senior Member (Voting Rights)

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    Oy. I guess I have to, don't I?
     
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  9. Trish

    Trish Moderator Staff Member

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    Yes please.
    :)
     
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  10. dave30th

    dave30th Senior Member (Voting Rights)

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  11. Trish

    Trish Moderator Staff Member

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    Thank you David.
     
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  12. dave30th

    dave30th Senior Member (Voting Rights)

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    well, let's see if anyone responds. this is the journal that published the bogus music-therapy and cbt study, in which one of the reviewers announced he/she/they had only read the abstract.
     
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  13. NelliePledge

    NelliePledge Moderator Staff Member

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    “Gold standard reviewing”
     
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  14. rvallee

    rvallee Senior Member (Voting Rights)

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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:

    [​IMG]
     
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  15. NelliePledge

    NelliePledge Moderator Staff Member

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    Can see it coming a mile off oh the reviewers don’t want to be named or their review published because of those people with ME and their friends “maliciously” pointing out “completely inadvertent” :whistle: omissions and errors
     
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