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Acceptance and Commitment Therapy for MuScle Disease (ACTMuS): Protocol for a two-arm randomised controlled trial of a brief guided self-help ACT prog

Discussion in 'Health News and Research unrelated to ME/CFS' started by Sly Saint, Sep 3, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Acceptance and Commitment Therapy for MuScle Disease (ACTMuS): Protocol for a two-arm randomised controlled trial of a brief guided self-help ACT programme for improving quality of life in people with Muscle diseases

    Trudie Chalder et Al

    From above:
    "ACT is a newer type of cognitive behavioural treatment that aims to improve QoL by virtue of improvement in a process called psychological flexibility."

    https://kclpure.kcl.ac.uk/portal/en...us(b8da3249-bbb3-4b7a-bf4e-f475f21e8f5b).html

    it gets worse.
    (ACT MuS looks suspiciously like MUS(?))
     
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  2. MEMarge

    MEMarge Senior Member (Voting Rights)

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    It's likely that most things with KCL in the link and Trudie Chalder as author will be dodgy.
     
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  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    If there was ever any doubt about how poor Dr Chalder's clinical trial work is, here it is again.
    Now we have overt faith healing - you have to accept and commit.

    Where does the capital S in MuScle come from? Surely this is a Freudian reference to MUS. You could not make this up.
     
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  4. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    Yep. ACT seems to be used a lot to treat MUS recently. Especially in Denmark. There are countless studies being conducted at the moment.

    A study that was published recently:

    Acceptance and Commitment group Therapy for patients with multiple functiomal somatic syndromes: a three-armed trial comparing ACT in a brief and extended version with enhanced care.

    Which was of course done by our 'Functional somatic syndromes' friends from Århus University. Fink and Schröder being co-authors.

    https://www.ncbi.nlm.nih.gov/pubmed/29941062

     
    Last edited: Sep 3, 2018
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  5. Amw66

    Amw66 Senior Member (Voting Rights)

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    So a replication study?
     
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  6. Londinium

    Londinium Senior Member (Voting Rights)

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    So A vs A+B combined with self-report... no danger of placebo response there then. :speechless:

    (Edited to remove question... helps if I click through properly...)
     
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The question was fair. Muscle disease is a tiny subspecialty including muscular dystrophies, myositis and not much else. Telling someone with Duchenne muscular dystrophy to accept their fate and commit themselves to feats their muscles cannot achieve seems likely to go down like a lead balloon, but with luck the patients will be wily enough to say they are much better thank you.
     
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  8. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    . I think making it up is the only thing the BPS gang are any good at :whistle:
     
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  9. Lucibee

    Lucibee Senior Member (Voting Rights)

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    I did this course a few years ago, which was run by the Pain and Fatigue Management Centre at Bronllys: http://www.powysthb.wales.nhs.uk/activate

    It was supposed to be based on ACT, but it seemed to draw on a whole rag-bag of CBT techniques. I didn't find it particularly helpful.

    It seems to have been quite popular recently, with a flurry of (often badly done) trials.

    This one is in chronic pain: https://www.ncbi.nlm.nih.gov/pubmed/24923259
    At least it attempts to use a non-treatment control group - but it doesn't control for the specific training that participants will get on the pain outcome measures in the intervention group.
     
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  10. Londinium

    Londinium Senior Member (Voting Rights)

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    Yeah, I asked it originally because when I saw MuScle [sic] Disease I thought 'they couldn't possibly mean they're using positive thinking on muscular dystrophy, could they?' and then when I read again I realised that's *exactly* what is planned...
     
  11. Lisa108

    Lisa108 Senior Member (Voting Rights)

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    "Individuals with a diagnosis of one of four specific MDs, with a duration of at least 6 months, and with mild to moderate anxiety or depression (HADS score ≥ 8) will be recruited" [my bold]

    So this is why it may work. Although the name of the study is very misleading. It should be named something like 'Acceptance and Commitment Therapy for Anxiety and Depression Associoated with Muscle Disease'
    or AACTADAWMUS(sounds like a wizard's spell)

    Wouldn't be too surprised if this little omission will be found again when they publish their results. And if people are critizing that it doesn't work for their Muscular Diseases, they can say that it was always meant for anxiety and depression...
     
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  12. Trish

    Trish Committee Member

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    That's interesting, thanks for sharing it @Lucibee.

    I had a look at the information at the link you gave. It was free lectures with no interaction. I have copied the details here:

    The thing that strikes me most strongly about this is how close it is to my experience of religion. The lecture topics could just as easily be the subject of sermons. Even the titles, Acceptance and Commitment, and Mindfulness, come straight from religious language.

    For example, one of the few prayers from my days of attempting (but failing) to believe in anything traditionally religious that I remember finding both apparently sensible, yet dishearteningly impossible to achieve, goes something like this:

    ''Grant me the courage to change the things I can change, the serenity to accept the things I cannot change, and the wisdom to know the difference''.

    I am not judging whether this is a good or a bad thing. Some people do apparently find it helpful, both as religious teaching and as therapy. I suppose I follow it anyway, in the sense that I try to think through whether there is anything I can actually do to change any difficult situation I find myself in, or whether I just have to accept it.

    But that feels pretty superficial to me. A logical/intellectual understanding of my situation can help clarify what action would be logical, but it doesn't begin to touch the deeper emotional impact of long term chronic illness, it just scratches at the surface. Nor does it enable me to get on and do the difficult things I decide I need to do. And I think I need to allow myself to be grumpy or miserable about being ill sometimes, and to grieve for the losses illness brings. Suppressing those emotions doesn't seem healthy to me.

    This sort of 'lecture' or 'sermon' can leave a person feeling a failure for not being able to reach the supposedly desirable level of courage, wisdom and serenity. Bad enough to pile that pressure on oneself, but to have a therapist (or religion) inducing a sense of guilt or failure if we can't achieve those 'goals' or 'ideals' can be damaging, I think.

    Edited.
     
    Last edited: Sep 5, 2018
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  13. Adrian

    Adrian Administrator

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    HADS is a bad scale and from what I remember of the questions its not good at distinguishing between people with depression and people who are ill.

    for example questions include:
    I still enjoy the things I used to enjoy: - Not I would enjoy things if I had the physical ability to do them
    Worrying thoughts go through my mind: - Perhaps an ME one around lack of diagnosis and dismissal by doctors
    I can enjoy a good book or radio or TV programme: - Or too ill for that one
    I look forward with enjoyment to things: - Perhaps if well enough to do them.
    I have lost interest in my appearance: - Good strategy to cope when too ill to do much
    I feel as if I am slowed down: - that happens when you are ill!

    There are 14 questions in total (7 depression and 7 anxiety). So I can easily pick out 6 that could give a wrong answer (towards depression I think). The question is has anyone looked at whether it can discriminate between chronic physical illness and anxiety/depression.
     
  14. Lucibee

    Lucibee Senior Member (Voting Rights)

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    @Trish - Sometimes it is hard to tell the difference between some modes of psychotherapy and religion.

    Here is a chapter on ACT by its founder Steven Hayes, which might shed some light on its background:

    "Acceptance and Commitment Therapy (ACT)... is explicitly contextualistic and is based on a basic experimental analysis of human language and cognition, Relational Frame Theory (RFT). RFT explains why cognitive fusion and experiential avoidance are both ubiquitous and harmful. ACT targets these processes and is producing supportive data both at the process and outcome level."
     

    Attached Files:

    Last edited: Sep 5, 2018
  15. Trish

    Trish Committee Member

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    Thank you, @Lucibee, that looks very interesting. I'll save it to read when I have enough available concentration. (And after I've read @Brian Hughes' Psychology in Crisis, which arrived yesterday).
     
  16. wdb

    wdb Senior Member (Voting Rights)

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    She might as well just accept she practices alternative medicine at this point.
    How is her research in any way different at all from this commonly used alternative medicine methodology criticised by Edzard Ernst ?

     
    Last edited: Sep 5, 2018
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  17. rvallee

    rvallee Senior Member (Voting Rights)

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    This would look bad enough if it weren't for the current context of clinical psychology facing a massive crisis of accuracy and credibility. Given that this is the context in which this is happening, it's just irresponsible.

    It's also really weird in the context of Afflicted and the flack chronically ill people get for trying something, anything to get better and medical professional tut-tutting at those poor fools for chasing false hope. And yet here they are, basically doing the same and claiming it's evidence-based. Evidence of what? Whatever you want it to be, of course!

    They're just throwing words out there as if they had any meaning by mere virtue of being licensed professionals. Slight variations in endless combinations.

    Sometimes it feels as if somehow instead of progressing towards a breakthrough things are just getting backwards all around. What in the hell is behind all this nonsense? It's so weird that they don't understand that they could be on the wrong end of this quackery.
     
  18. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    @Trish I think your observations are apt. I looked into ACT and to me it appears to be a mishmash of Buddhist dispositions (mindfulness/acceptance of limitations and suffering), Protestant dispositions (overcome and act according to morals) and it's own particular brand of psychoanalytical behavioro-linguistic theory. Of course with 'empirical basis'. I was looking around on this website for info: https://contextualscience.org/act

    The point being that it is a philosophy or spiritual practice. As such it doesn't seem to be such a bad one. It appears to contain nuggets of wisdom and possibly useful practices, so long as one ignores the babbling theoretical framework (the underlying belief system!), which is highly wrought drivel. In particular I appreciate that the philosophy places strong emphasis on 'acceptance' and encourages 'valued' action without emphasis on 'shame' or 'failure' or 'sin'.

    I generally don't think this sort of thing should be in the medical system. It doesn't address disease, specifically; it more gets after general truisms of the human condition that apply to individuals in varying degrees. To @rvallee 's points, if implemented, patients who aren't interested in it or don't find it helpful will probably be shamed and stigmatized for not wanting to get better or make the best of their situation, regardless of the actual tenets of the ACT philosophy. It will also be part of the whole MUS smokescreen, probably in some warped 'curative' form.
     
  19. Woolie

    Woolie Committee member

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    Yes. I have no problem with ACT. Good techniques to help people cope with grief and severe life events. But it isn't ACT, though is it?

    How do you stop this sort of co-opting of the latest buzzwords? It seems an unsolveable problem with behavioural interventions.
     
  20. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    It’s cause the flavour of the month is what gets £££££ so everyone tweaks what they call what they’re doing to keep funding. Seen this effect in Human Resouces and Training initiatives in my large public sector former employer organisation.
     

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