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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
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

Abstract
Introduction: In adults, muscle disease (MD) is most often a chronic long term condition with no definitive cure. It causes wasting and weakness of the muscles resulting in a progressive decline in mobility, alongside other symptoms, and is typically associated with reduced quality of life (QoL). Previous research suggests that a psychological intervention, and in particular Acceptance and Commitment Therapy (ACT), may help improve QoL in MD. ACT is a newer type of cognitive behavioural treatment that aims to improve QoL by virtue of improvement in a process called psychological flexibility. The primary aim of this randomised control trial (RCT) is to evaluate the efficacy of a guided self-help ACT programme for improving QoL in people with MD. Main secondary outcomes are mood, symptom impact, work and social adjustment and function at 9-week follow-up.

Methods and analysis: ACTMuS is an assessor-blind, multicentre, two-armed, parallel-group RCT to assess the efficacy of ACT plus standard medical care (SMC) compared to SMC alone. 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 from UK-based MD clinics and MD patient support organisations. Participants will be randomised to either ACT plus SMC or SMC alone by an independent randomisation service. Participants will be followed up at 3, 6 and 9 weeks. Analysis will be intention to treat, conducted by the trial statistician who will be blinded to treatment allocation.
Ethics and dissemination: The study has received full ethical approval. Study results will be disseminated via peer-reviewed publications, conference presentations and journal articles. Data obtained from the trial will enable clinicians and health service providers to make informed decisions regarding the efficacy of ACT for improving QoL for patients with MD.
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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(?))
 
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.
 
Sly Saint said:
(ACT MuS looks suspiciously like MUS(?))
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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

BACKGROUND:
Psychological treatment for functional somatic syndromes (FSS) has been found moderately effective. Information on how much treatment is needed to obtain improvement is sparse. We assessed the efficacy of a brief and extended version of group-based Acceptance and Commitment Therapy (ACT) v. enhanced care (EC) for patients with multiple FSS operationalised as Bodily Distress Syndrome multi-organ type.

METHODS:
In a randomised controlled three-armed trial, consecutively referred patients aged 20-50 with multiple FSS were randomly assigned to either (1) EC; (2) Brief ACT: EC plus 1-day workshop and one individual consultation; or (3) Extended ACT: EC plus nine 3-h group-based sessions. Primary outcome was patient-rated overall health improvement on the five-point clinical global improvement scale 14 months after randomisation. A proportional odds model was used for the analyses.

RESULTS:
A total of 180 patients were randomised; 60 to EC, 61 to Brief ACT, and 59 to Extended ACT. Improvement on the primary outcome after Extended ACT was significantly greater than after EC with an unadjusted OR of 2.9 [95% CI (1.4-6.2), p = 0.006]. No significant differences were found between Brief ACT and EC. Of the 18 secondary outcomes, the only significant difference found was for physical functioning in the comparison of Extended ACT with EC.

CONCLUSIONS:
Patients rated their overall health status as more improved after Extensive ACT than after EC; however, clinically relevant secondary outcome measures did not support this finding. Discrepancies between primary and secondary outcomes in this trial are discussed.
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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.
 
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.
 
Jonathan Edwards said:
The question was fair. Muscle disease is a tiny subspecialty including muscular dystrophies, myositis and not much else.
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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...
 
"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...
 
Lucibee said:
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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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:

What do ACTivate Your Life classes teach people about?

The range of topics discussed include:

  • Accepting what we can't change, changing what we can change and committing to living a full life regardless.
  • Changing how we react to our stresses and emotional issues, as suffering can come from our reactions to situations
  • How to respond to situations mindfully
  • How rumination and worry can lead to suffering
  • Personal values
  • How to identify what matters to you and how to live by this
  • How to living in the present moment rather than worrying or brooding about past or future events
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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.

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Lisa108 said:
"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]
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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.
 
@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."
 

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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 ?

Would it not be nice to have a world where everything is positive? No negative findings ever! A dream! No, it’s not a dream; it is reality, albeit a reality that exists mostly in the narrow realm of alternative medicine research. Quite a while ago, we have demonstrated that journals of alternative medicine never publish negative results. Meanwhile, my colleagues investigating acupuncture, homeopathy, chiropractic etc. seem to have perfected their strategy of avoiding the embarrassment of a negative finding.

Since several years, researchers in this field have adopted a study-design which is virtually sure to generate nothing but positive results. It is being employed widely by enthusiasts of placebo-therapies, and it is easy to understand why: it allows them to conduct seemingly rigorous trials which can impress decision-makers and invariably suggests even the most useless treatment to work wonders.

One of the latest examples of this type of approach is a trial where acupuncture was tested as a treatment of cancer-related fatigue...

In this new study, cancer patients who were suffering from fatigue were randomised to receive usual care or usual care plus regular acupuncture. The researchers then monitored the patients’ experience of fatigue and found that the acupuncture group did better than the control group. The effect was statistically significant, and an editorial in the journal where it was published called this evidence “compelling”.

Due to a cleverly over-stated press-release, news spread fast, and the study was celebrated worldwide as a major breakthrough in cancer-care...

In order to understand my concern, we need to look at the trial-design a little closer. Imagine you have an amount of money A and your friend owns the same sum plus another amount B. Who has more money? Simple, it is, of course your friend: A+B will always be more than A [unless B is a negative amount]. For the same reason, such “pragmatic” trials will always generate positive results [unless the treatment in question does actual harm]. Treatment as usual plus acupuncture is more than treatment as usual, and the former is therefore more than likely to produce a better result. This will be true, even if acupuncture is no more than a placebo – after all, a placebo is more than nothing, and the placebo effect will impact on the outcome, particularly if we are dealing with a highly subjective symptom such as fatigue...

I have seen far too many of those bogus studies to have much patience left. They do not represent an honest test of anything, simply because we know their result even before the trial has started. They are not science but thinly disguised promotion. They are not just a waste of money, they are dangerous – because they produce misleading results – and they are thus also unethical.
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Lucibee said:
@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 Stephen 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."
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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.
 
@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.
 
Lucibee said:
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.
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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.
 
Woolie said:
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.
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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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