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Why Should ACT Work When CBT Has Failed? a Study Assessing Acceptability and Feasibility of Acceptance and Commitment Therapy (ACT), 2022, Crawley

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Andy, Jul 2, 2022.

  1. Andy

    Andy Committee Member

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    Full title: Why Should ACT Work When CBT Has Failed? a Study Assessing Acceptability and Feasibility of Acceptance and Commitment Therapy (ACT) for Paediatric Patients With Chronic Fatigue Syndrome/myalgic Encephalomyelitis (CFS/ME)

    Aims
    Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) effects 0.5–3.28% of children. NICE guidance recommends Activity Management, Graded Exercise Therapy or Cognitive Behavioural Therapy for fatigue (CBT-f). Approximately 15% of patients do not achieve full recovery within one year with current treatments. Acceptance and Commitment Therapy (ACT) is an effective treatment in many chronic illnesses. There are no studies investigating ACT for paediatric CFS/ME. This feasability study aimed to assess if ACT is a feasible and acceptable alternative treatment when current treatment has not led to recovery.

    Methods
    This feasability cohort study aimed to enrol a minimum of 12 participants aged 11–18 yearswith CFS/ME attending the Royal United Hospitals Bath NHS Foundation Trust Specialist Paediatric CFS/ME Service, who were still symptomatic after 12 months or 12 sessions of standard treatment and were offered six to 12 sessions of ACT. Retention and recruitment data were analysed. Participants were asked to complete questionnaires before, during and after treatment. A selection of participants and their parents were interviewed about their experience of the study. Interviews were analysed using thematic analysis.

    Results
    19 participants (95% of those approached) were recruited. Only 4 participants of this hard-to-reach group did not complete treatment.

    In almost all sessions participants reported that they felt ‘totally’ listened to in post session questionnaires (31/33 sessions).

    Preliminary interviews (n = 12) indicate acceptability of ACT, with all young people and their parents stating that they thought ACT should be offered to this population. Participants particularly commented that the absence of thought challenging (used in CBT-f) was a positive element of ACT. Participant's openness to try new approaches and altruistic desire to be in a study was noted.

    Conclusion
    Recruitment data indicate that it is feasible to recruit and retain 11–18-year-olds with CFS/ME to a study offering ACT. Interviews with participants and parents were broadly positive suggesting ACT is an acceptable treatment in this population.

    Results indicated that it is both feasible and acceptable to offer ACT to 11–18-year-olds with CFS/ME using this protocol, supporting the prospect of an RCT in this area.

    Open access, https://www.cambridge.org/core/jour...elitis-cfsme/938A6D45DE4C98BD28AF6C4B39A96942
     
    Simone and Peter Trewhitt like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    CBT has failed- from one of the horse’s mouths. Sharpe and Chalder will be crossing her off their Christmas card list.
     
    sebaaa, Ali, Solstice and 14 others like this.
  3. Trish

    Trish Moderator Staff Member

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    Unfortunately they only say it fails in a few. Their outrageous claim that CBT/GET leads to recovery within a year for all but 15% needs challenging.
    And their claim that CBT/GET is currently recommended by NICE.

    They need to be challenged on this.
    @dave30th
     
    Last edited: Jul 2, 2022
    sebaaa, Mithriel, Ali and 24 others like this.
  4. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    When reading papers like this, I always have to think back to when I was getting therapy for "school refusal" (actually crippling fatigue, but that wasn't allowed to be real, it had to be a psychological problem) and I treated therapy as some sort of process where I had to go along with whatever the therapist wanted. Make up some problem because there wasn't one. Pretend the therapy was useful. After a while I stopped going because exactly nothing was happening. The therapist was of course thrilled with the progress that was being made and said I need more sessions.

    It really puts into perspective how little it means that participants report positive feedback.

    They've built this powerful myth of therapy being a solution to just about any problem not yet claimed by other another profession and take a lot of money from gullible or desperate patients or those who are pressured into therapy and don't have the capacity to resist.

    Why would therapy treat fatigue? Just the idea is absurd.
     
    Last edited: Jul 2, 2022
    Sid, SNT Gatchaman, Mithriel and 20 others like this.
  5. chrisb

    chrisb Senior Member (Voting Rights)

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    If they want to be positive tthey could use the slogan:

    "ACT. Nothing works better."
     
    Hutan, Solstice, Simbindi and 7 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    ah well according to the RCPCH, NICEs description of what they think GET is, is not what they do. So presumably they now think its OK.

    https://www.rcpch.ac.uk/resources/me-cfs-nice-clinical-guideline-member-briefing

    that said, in MAGENTA EC did use fixed increments, so she needs to make her mind up.

     
  7. Creekside

    Creekside Senior Member (Voting Rights)

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    Why should the same old sh*t work now? Answer: because it's got a new label!!! :rolleyes:
     
    Solstice, Sean, TigerLilea and 8 others like this.
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    Specifically:
    The first sentence is a lie. The other is a different lie. There is no basis to say the treatments have anything to do with any definition of recovery. It is well-acknowledged, and Long Covid has made that beyond obvious, that there is a natural recovery from infections that is irrelevant of any treatment.

    Academic publishing is completely broken. False claims make their way onto abstracts and no one cares. I'm not even sure the journal will bother correcting this, they are clearly OK with publishing false claims that are popular.

    The pattern has really been confirmed lately: in evidence-based medicine, "good study" = I like the conclusions, "bad study" = I don't like the conclusions. The content, intent, substance, even the treatments, patients and data, are completely irrelevant. Everything is decided based on how fashionable something is, entirely regardless of substance.
     
    Mithriel, Hutan, Solstice and 7 others like this.
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    I only tried therapy once for this. I was basically fired by my GP, tried to get healthcare elsewhere and was told this was the only thing anyone could do. I tried it on my own. It was a complete waste of time. And money I didn't have at the time, but it was cheap so whatever.

    After a few sessions talking about the reasons I was there, for which psychology has nothing coherent to offer or do, we spent the rest of the sessions talking about a non-existent problem. And only about this non-existent problem. I was very cognitively impaired at the time so did not have the capacity to point out that it was pointless to discuss this.

    The therapist, a PhD in training with a professor watching somewhere else, never asked whether this non-issue was an issue at all, how important it was, how significant it was, to which I would have simply replied 0, it's completely trivial. It wasn't why I was there at all, this was not an issue, it was just the first thing that came to mind when the change of subject was brought off.

    At the last session I didn't really say anything about the whole thing, just thank you. I wasn't asked either. Did this help? Did this solve the problem? Any problem? Was this any useful? Or even relevant? Literally 0 on all questions, if they had asked. Or, I guess, probably 1 because they usually use 1-10 scales, rarely have an option for 0.

    I'm sure the professor thought it went well and the student got a good grade for it. It was completely useless, and neither know it. Only me. They simply don't know when what they're doing is irrelevant because they just don't ask.

    That's what happens when a real problem is re-attributed to a fake one: they don't know it's irrelevant, because they don't know what is. I really don't see how psychology has any role to play here, they simply don't have the capacity to be relevant.
     
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  10. dave30th

    dave30th Senior Member (Voting Rights)

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    Yes, I've seen. They suggest that NiCE recommends these for "fatigue" and mention CBT-f. Just to make sure: There is not a separate guidance for fatigue, right? Has anyone come across CBT-f before?
     
    Mithriel, CRG, Hutan and 7 others like this.
  11. Andy

    Andy Committee Member

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    "Cognitive behavioural therapy. This may be appropriate for some people with CFS specifically those who would find it useful to help manage their symptoms, improve their functioning and reduce the stress of living with a long-term illness."

    https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/management/management/

    Is the closest to a NICE recommendation that I could find with a quick Google search.
     
    Hutan, Sean, Peter Trewhitt and 2 others like this.
  12. Trish

    Trish Moderator Staff Member

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    I did a google search and found this PDF document produced by the Bath Paediatric clinic, which is Crawley's clinic.
    https://www.ruh.nhs.uk/patients/ser...rofessionals/CBT_for_CFS_Therapist_Manual.pdf
    CBT for Chronic Fatigue: Therapist Manual
    PAEDIATRIC ME/CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK
    Starbuck, J., Loades, M.E., & Chapple, K. | 2022

    I haven't read it all, but it's clear they are still working with the fear avoldance and excessing symptom focusing model and with setting goals etc.

    Edit: It seems they are still conflating CF and CFS.
     
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  13. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I am sure I have seen the term CBT-f before and that it is CBT for fatigue, but at present I can’t remember whether it was in the context of research by one of the usual UK BPS suspects or in the context of a British specialist service. Hopefully I will be able to remember more over the next few hours.
     
    alktipping and Mithriel like this.
  14. NelliePledge

    NelliePledge Moderator Staff Member

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  15. Sean

    Sean Moderator Staff Member

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    It is beyond dispute that the BPS mob have not changed their position at all post-NICE.
     
    alktipping, mango, Mithriel and 6 others like this.
  16. Solstice

    Solstice Senior Member (Voting Rights)

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    My sister-in-law is a psychologist and through her I learned there's basically a diagnosis for every character trait after which a therapist can start charging to cure you of that trait. If that trait is helpful or unhelpful doesn't really matter, billable hours do.
     
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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    thread here
    https://www.s4me.info/threads/cbt-f...tal-bath-uk-loades-m-e-starbuck-j-2020.16652/
    yes, Crawley et al have used it a lot.

    eta: eg
    "UK specialist medical care (SMC) for paediatric Chronic Fatigue Syndrome (CFS/ME) includes behavioural approaches (Graded Exercise Therapy; Activity Management) and Cognitive Behavioural Therapy for fatigue (CBT-F)."

    https://www.s4me.info/threads/cbt-r...for-paediatric-cfs-2021-anderson-et-al.21335/
     
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  19. Trish

    Trish Moderator Staff Member

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    I note that this paper is published in a journal of the Royal College of Psychiatrists.
     
  20. CRG

    CRG Senior Member (Voting Rights)

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    My comments in bold

    Aims
    Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) effects 0.5–3.28% of children. (poster presentation so no need to reference a claim that up 400k UK under 18s could have ME/CFS - and really can't they proof read out effects/affects ?)


    NICE guidance recommends Activity Management, Graded Exercise Therapy or Cognitive Behavioural Therapy for fatigue (CBT-f). Approximately 15% of patients do not achieve full recovery within one year with current treatments. Acceptance and Commitment Therapy (ACT) is an effective treatment in many chronic illnesses. (a neat sleight of hand for a non critical audience - start with ME/CFS, then insert a non sequitur reference to chronic fatigue. There is no NICE recommendation Activity Management, Graded Exercise Therapy or Cognitive Behavioural Therapy)

    There are no studies investigating ACT for paediatric CFS/ME. This feasability study aimed to assess if ACT is a feasible and acceptable alternative treatment when current treatment has not led to recovery. (so any young person presenting with fatigue, whatever their health status gets put through the GET/CBT mill, and those not left standing = 15% who need something else ?)

    Methods
    This feasability cohort study aimed to enrol a minimum of 12 participants aged 11–18 years with CFS/ME attending the Royal United Hospitals Bath NHS Foundation Trust Specialist Paediatric CFS/ME Service, who were still symptomatic after 12 months or 12 sessions of standard treatment and were offered six to 12 sessions of ACT. Retention and recruitment data were analysed. Participants were asked to complete questionnaires before, during and after treatment. A selection of participants and their parents were interviewed about their experience of the study. Interviews were analysed using thematic analysis. (so this is a 'failed' cohort - they've been through 12 months of GET & CBT, disappointing the therapists, worrying their parents, and themselves feeling pretty hopeless ? even then the authors still felt they should make a selection of who to interview i.e don't include those who dropped out, nor 3 other families for unreported reasons)

    Results
    19 participants (95% of those approached) were recruited. Only 4 participants of this hard-to-reach group did not complete treatment. (there was a 21% dropout rate)

    In almost all sessions participants reported that they felt ‘totally’ listened to in post session questionnaires (31/33 sessions). ('totally listened to' by questionnaire !)

    Preliminary interviews (n = 12) indicate acceptability of ACT, with all young people and their parents stating that they thought ACT should be offered to this population. Participants particularly commented that the absence of thought challenging (used in CBT-f) was a positive element of ACT. Participant's openness to try new approaches and altruistic desire to be in a study was noted. (job done so we'll throw in the fact that that these desperate families were keen to please, shows we acknowledge the problem without having to actually - 'acknowledge the problem')

    Conclusion
    Recruitment data indicate that it is feasible to recruit and retain 11–18-year-olds with CFS/ME to a study offering ACT. Interviews with participants and parents were broadly positive suggesting ACT is an acceptable treatment in this population. (broadly positive ? so you're not going to tell us what the criticisms were ?)

    Results indicated that it is both feasible and acceptable to offer ACT to 11–18-year-olds with CFS/ME using this protocol, supporting the prospect of an RCT in this area. (there's a surprise, grant application no doubt already on its way)

    Amended to note there is no NICE recommendation on Activity Management, Graded Exercise Therapy or Cognitive Behavioural Therapy for fatigue !

     
    Last edited: Jul 3, 2022
    Wyva, Sean, alktipping and 4 others like this.

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