Acceptance and Commitment Therapy for ME/CFS - Discussion thread

I have done a forum search and found 9 threads about Acceptance and Commitment Therapy. So you may ask, why start another one.

With the removal of recommendations of GET and directive CBT for ME/CFS in the UK and some other countries' national guidelines for ME/CFS, therapists are looking around for other therapies to keep the research gravy train on the rails. It is clear that two of the worst offenders with a proven track record of shoddy trial methodologies are already heading in this direction, namely Professors Trudie Chalder and Esther Crawley, with preliminary studies already planned, under way or completed.

I think we need therefore to be prepared with -
A clear understanding of what ACT is - both the psychological and behavioural components
A clear understanding of the particular versions of ACT are already being used for physical conditions including ME/CFS
A close watch on any published protocols, funding, ethics approvals, details of therapists and patients' materials, and published studies.

Here is a list with links for the threads we already have about ACT:

Sweden: Acceptance & Commitment Therapy for ME/CFS – A feasibility study, 2019, Jonsjö et al
Study published March 2019, supposed to be a feasiblity study but results report 'success' despite no control group and 8 of 40 patients dropping out. Based on the same team's use of ACT for chronic pain patients. The aim of the study was to increase 'psychological flexibility', and thereby enable achieving goals by not letting symptoms stop activity.

Spoiler: aims and rationale

The primary aim in such treatments is not to reduce symptoms, but to improve functioning and quality of life by increasing what is termed psychological flexibility. This is defined as the ability to act in line with important long-term goals or values in life, even in the presence of negative experiences (e.g. non-acute somatic symptoms or psychological distress) (Hayes et al, 1999). Psychological flexibility is a complex overarching behavioral construct that includes several behavioral processes such as acceptance/non-acceptance and cognitive fusion/defusion.5 In ACT, unwillingness to experience discomfort is considered to decrease tolerance to bodily symptoms and psychological reactions and to predict behaviors to alleviate distress. Over time, strategies to avoid or reduce experiences of symptoms and distress (i.e. experiential avoidance) restrict activities and thereby reduce the possibility to live a broad and satisfactory life. This in turn, may increase levels of disability and depression (Zetterqvist et al, 2017).

Discussing acceptance and commitment therapy in ME/CFS.
@Michiel Tack submitted an excellent critique of the above study, it was not published. He posted the reasons given and his response on the thread.


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
Thread turned into a general discussion of ACT, including this paper:

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.
3 groups, 60 in each: enhanced care (EC), EC + short ACT, EC + longer ACT.
The longer ACT group scored higher than the others on the primary outcome of a global health improvement questionnaire, but not on any of the 'clinically relevant secondary outcome measures'.

BBC Radio 4 - Acceptance and commitment therapy -featuring Trudie Chalder Nov 2019
Program in the series All in the Mind. From the blurb:

Feasibility of group-based acceptance & commitment therapy for adolescents (AHEAD) w/multiple functional somatic syndromes, 2020,Hansen Kallesøe et al
Danish study 21 adolescent patients, no control group. Reported 'success' at 3 months after treatment. 'The overall aim was to support the adolescents to shift behaviour from symptom-related control and avoidance to values-based actions also when aversive symptoms are present i.e. increase psychological flexibility.'

Sweden: Webinar: Gunnar Olsson on ACT for ME, hosted by Bragée ME Center
Short discussion on the thread, not clear what the ACT plan involves for ME.

Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with chronic fatigue syndrome, Crawley et al. October 2021
Preprint published first.
Study with adolescents from their clinic who are still sick a year after starting treatement at the clinic. 'Twelve adolescents, eleven parents and seven HCPs were interviewed. All participants thought ACT was acceptable.' Unsurprisingly the kids thought ACT sounded nicer than CBT, but didn't like the idea of randomisation for a study.
A very recent publication, clearly a preliminary to getting lots of funding for a trial.

ACT Randomized Controlled Trials since 1986 Submitted by Steven Hayes
The inventor of ACT is keeping a list of studies. No discussion on thread.

Effects of a mindfulness-based and acceptance-based group programme followed by physical activity for patients with fibromyalgia, 2021, Haugmark et al
Norwegian study, 170 patients split 1:1 treatment:control.
'A multicomponent rehabilitation programme combining patient education with a mindfulness-based and acceptance-based group programme followed by physical activity counselling was not more effective than patient education and treatment as usual for patients with recently diagnosed fibromyalgia at 12-month follow-up.'
There was also a high drop out rate from the physical activity component of the treatment.

More threads added in post 6 below.

 

I read through all the above listed threads and the Wikipedia article on ACT.
From these I glean the following:
1. ACT is a form of CBT. It's about getting patients to make changes in the way they think (the cognitive part), and the way they act (the behavioural part).
From Psychology Today

2. Like CBT, it was originally intended to treat people with psychological disorders, but has been expanded to include physical symptoms and diseases, particularly pain.

3. There doesn't seem to have been any randomised controlled trial of ACT specifically for ME/CFS. The nearest we've discussed here is the one for Fibromyalgia, listed above, which showed ACT didn't work.

4. ACT, while seeming 'nicer' for ME/CFS, because it superficially seems to involved being kinder to oneself, accepting that we don't feel OK, etc. But it is just as bad in intention, asking us to be 'cognitively flexible' in order to overcome our anxiety that doing more will harm us. It seems to be aimed to get us to view our symptoms differently, just like CBT does, only instead of telling ourselves that our fatigue is normal and we're just afraid of exercise as in CBT, we are encouraged to feel the fatigue, accept it, and get on with achieving our goals anyway.

I can see that CBT and ACT could be designed differently for ME/CFS, with the aim of helping us cope with our symptoms, and to live within our energy limits, but as the FM study showed, ACT, just like CBT, seems to be specifically aimed at encouraging people to ignore / accept symptoms and push through towards goals.

Whenever I read stuff about CBT and ACT, I think of the title of a book I haven't read: Feel The Fear And Do It Anyway by Susan Jeffers.

 

Thanks, @Sly Saint. I only tried the Acceptance and Commitment Therapy tag and the forum title search. I'll have a look at the others.

 

More threads found using the act tag search:

SureCan study: Survivors' Rehabilitation Evaluation after Cancer; 2018-2022+ Taylor, Chalder
Large project spanning several years, starting with a meta-synthesis of studies, then development, pilot, pilot RCT, full RCT of ACT for cancer patients. No discussion apart from general concern.

Vulvodynia; next target "MUS" for ACT
Rona Moss Morris et al. Study title:
The role of psychological flexibility, perceived injustice and body image in Vulvodynia: A longitudinal study.
Online study, just 2 questionnaires at 3 month interval, Conclusion: 'Among women with Vulvodynia, pain acceptance and committed action are prospectively associated with pain interference and depression. ...Future studies should investigate whether targeting these factors enhances outcomes in Vulvodynia.'
Looks like correlaton being confused with causation in order to justify future treatment trial of ACT.

ExFACTR Study: Exploring the Feasibility of ACT for Children and young people with CFS/ME ... in prep. for an RCT. Crawley et al. Recruiting Jan 2021
The protocol for the Crawley study listed in post 1.

Effectiveness of an ACT‐based rehabilitation program for the treatment of chronic fatigue: Results from a 12‐months longitudinal study, 2020, Brugnera
NOTE: This is chronic fatigue, not ME/CFS. CF is broad ranging and includes pain and mental disorders. Done by a rehab clinic.
195 workers on sick leave of at least 8 weeks with a diagnosis of chronic fatigue were enrolled in a manualized, 3.5‐week intensive return‐to‐work rehabilitation program based on ACT. All completed a battery of questionnaires at pre‐, post‐treatment, 6 and 12 months follow‐up.
NO control group.
Findings significant changes on a range of questionnaires. '...pre‐to‐post changes in fear avoidance beliefs were most often associated with a greater change in outcomes across follow‐up.'

The prevalence and impact of psychoneuroimmunological factors in ME/CFS: Effects and mechanisms of ACT (2019) Olsson et al.
More about Swedish trial from post 1
ACT for ME/CFS - an Open Case Trial
and this one:
Sweden: Acceptance & Commitment Therapy for ME/CFS – A feasibility study, 2019, Jonsjö et al
Includes the Psychological inflexibility and pain scale here

BABCP Annual Conference and Workshops
Conference in 2019, we don't have much detail, but it included Chalder and Moss-Morris on integrating physical conditions into IAPT.

 

Posts of interest from the thread about the planned Swedish study, which is intended also to include a range of physiological tests including activity.

This attachment makes it crystal clear that ACT is being applied on the fear-avoidance model, with patients being told to accept the increased symptoms and to increase activity. So it's GET.

 

Relevant sections of the new NICE guideline:
https://www.nice.org.uk/guidance/ng...e-diagnosis-and-management-pdf-66143718094021
I have bolded relevant parts that should specifically rule out the model of ACT described in the above studies.

Section 1.11.2 Energy Management
1.11.2 Discuss with people with ME/CFS the principles of energy management, the potential benefits and risks and what they should expect. Explain that it:
• is not curative
• is a self-management strategy led by the person themselves with support from a healthcare professional in an ME/CFS specialist team
• includes all types of activity (cognitive, physical, emotional and social) and takes into account overall level of activity
• helps people learn to use the amount of energy they have while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits
• recognises that each person has a different and fluctuating energy limit and they are experts in judging their own limits
• can include help from a healthcare professional to recognise when they are approaching their limit (children and young people in particular may find it harder to judge their limits and can overreach them)
• uses a flexible, tailored approach so that activity is never automatically increased but is maintained or adjusted (upwards after a period of stability or downwards when symptoms are worse)
• is a long-term approach − it can take weeks, months or sometimes even years to reach stabilisation or to increase tolerance or activity.

1.11.3 Help people with ME/CFS develop a plan for energy management as part of their care and support plan. Support them to establish realistic expectations and develop goals that are meaningful to them. Discuss and record the following in the plan along with anything else that is important to the person:
• cognitive activity
• mobility and other physical activity
• ability to undertake activities of daily living
• psychological, emotional and social demands, including family and sexual relationships
• rest and relaxation (both quality and duration)
• sleep quality and duration
• effect of environmental factors, including sensory stimulation.

1.11.4 Work with the person to establish an individual activity pattern within their current energy limits that minimises their symptoms. For example:
• agree a sustainable level of activity as the first step, which may mean reducing activity
• plan periods of rest and activity, and incorporate the need for pre-emptive rest
• alternate and vary between different types of activity and break activities into small chunks.

1.11.5 Agree how often to review the person's energy management plan with them and revise it if needed.

1.11.6 Advise people with ME/CFS how to manage flare-ups and relapses (see the section on managing flare-ups in symptoms and relapse).

1.11.7 Make self-monitoring of activity as easy as possible by taking advantage of any tools the person already uses, such as an activity tracker, phone heart-rate monitor or diary.

1.11.8 Refer people with ME/CFS to a physiotherapist or occupational therapist working in an ME/CFS specialist team if they:
• have difficulties caused by reduced physical activity or mobility (also see the sections on physical functioning and mobility and care for people with severe or very severe ME/CFS) or
• feel ready to progress their physical activity beyond their current activities of daily living (see the section on physical activity and exercise) or
• would like to incorporate a physical activity or exercise programme into managing their ME/CFS (see the section on incorporating physical activity and exercise).

Incorporating physical activity and exercise
1.11.9 Do not advise people with ME/CFS to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms.

1.11.10 Only consider a personalised physical activity or exercise programme for people with ME/CFS who:
• feel ready to progress their physical activity beyond their current activities of daily living or
• would like to incorporate physical activity or exercise into managing their ME/CFS.

1.11.11 Tell people about the risks and benefits of physical activity and exercise programmes. Explain that some people with ME/CFS have found that they can make their symptoms worse, for some people it makes no difference and others find them helpful.

1.11.12 If a physical activity or exercise programme is offered, it should be overseen by a physiotherapist in an ME/CFS specialist team.

1.11.13 If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree a programme with them that involves the following and review it regularly:
• establishing their physical activity baseline at a level that does not worsen their symptoms
• initially reducing physical activity to be below their baseline level
• maintaining this successfully for a period of time before attempting to increase it
• making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits
• recognising a flare-up or relapse early and outlining how to manage it.

1.11.14 Do not offer people with ME/CFS:
• any therapy based on physical activity or exercise as a cure for ME/CFS • generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
• any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
• physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.

Box 4
Graded exercise therapy definition
Graded exercise therapy is a term used in varying ways by different services supporting people with ME/CFS. In this guideline, graded exercise therapy is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active. This definition of graded exercise therapy reflects the descriptions given in the evidence that was reviewed, and it is this approach that the guideline says should not be undertaken. An individualised approach that should be taken for people with ME/CFS who choose to undertake a physical activity or exercise programme is described in recommendations 1.11.10 to 1.11.13.

Flare-ups and relapse
1.11.15 Agree with the person how to adjust their physical activity during a flare-up or relapse. This should include:
• providing access to review and support from a physiotherapist in an ME/CFS specialist team
• stabilising their symptoms by reducing physical activity to within their current energy limits
• only once symptoms stabilise and the person feels able to resume physical activity, establishing a new physical activity baseline.
1.11.16 Advise people with ME/CFS after a flare-up that the time it takes to return to the level of physical activity they had before varies from person to person.

 

It's linked at the top of my post quoting the guideline.

 

I thought that too, but I have changed my mind. I think it's true the idea of why we have symptoms is different:
CBT for ME based on deconditioning causing symptoms, ACT is based on symptoms being physiological.

But the next steps for both are basically the same, based on changing thinking to stop being afraid to increase activity, so the behavioural aim is the same: Setting goals and increasing activity and ignoring or accepting any increases in symptoms.

It needn't be like that for either therapy if the therapist designs them to help pwME cope with pacing, but all the examples of both therapies in trials for ME/CFS and any other fatiguing condition are all aimed at overcoming exercise avoidance and are basically GET with accompanying psychobabble.

That's why it think it's vital we keep a close eye on the protocols for any current and future trials of ACT for ME/CFS.