Sweden: Acceptance & Commitment Therapy for ME/CFS – A feasibility study, 2019, Jonsjö et al

Sly Saint

Sly Saint

Senior Member (Voting Rights)
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Summary
The goal of this research project is to evaluate if our well-researched behavior medicine treatment model for chronic pain, based on Acceptance and Commitment Therapy, is safe and effective in increasing quality of life and functioning also in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). To date there are no effective treatments for ME/CFS as the ethology and pathophysiology are unknown, while levels of functioning and quality of life as well as secondary effects such as depressive and anxiety symptoms indicate a highly affected patient population. As such, there is a need for behavior medicine approaches that aim to alleviate suffering and promote increases in quality of life for these patients. The aim of the present study is to do a preliminary evaluation of the safety, acceptability and efficacy of an ACT-based treatment protocol for ME/CFS. An additional aim is to explore potential mediators of change for the effect of treatment on disability."


the rest here:
https://www.bioportfolio.com/resources/trial/209751/ACT-for-ME-CFS-an-Open-Case-Trial.html

now completed
https://clinicaltrials.gov/ct2/show/NCT03562325
 
It indicates the trial was completed last October.

I don't know why, when I see the phrase 'Acceptance and Commitment Therapy', I have an urge to run away screaming.
Perhaps it's the moralistic, religious overtones in those words...
Clearly not a therapy for a grumpy old woman like me.
 
Interesting information to be highlighted. My bolding. Looking forward to more biological results from ongoing studies to come.

ClinicalTrials.gov Identifier: NCT03562325
Recruitment Status : Completed
First Posted : June 19, 2018
Last Update Posted : June 19, 2018
Sponsor:
Rikard Wicksell
Collaborators:
Stockholm County Council, Sweden
Skandia Insurance Company, Ltd.
Information provided by (Responsible Party):
Rikard Wicksell, Karolinska Institutet
 
Gunnar Olsson, one of the main investigators, was a speaker at a BPS conference in Norway a couple of weeks ago, according to the program posted in this thread: https://www.s4me.info/threads/biopsychosocial-seminar-in-norway-june-2018.2070/

The title of his talk was "The opioid-epidemic - from despair to hope. The pain doctors experience with transition from drug focus to non-drug-mastering-strategies with longterm pain". Would be interesting to know if he mentioned anything about this "ACT" (CBT/GET) study, or any of his other ongoing studies...
 
mango said:
It says that one of the main goals is to introduce terminology based on the patients' problematic behaviours and avoidance behaviours in relation to pain and other kinds of [discomfort
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I ride my motorbike for 15 mins through immense pain, discomfort, jelly body and brain fog (in the middle of the night so i’ll only kill myself if my body or brain seizes on me).

I then don’t ride it during the 2-3 months of paralysis aferwards. I wish i could learn some ‘problematic avoidance behaviours’ to stop me constantly trying to have fun in this sea of endless torture. Adds a new dimension to the ‘push-crash’ idea.
I’m trying to keep the ‘crash’ part indoors at home instead of on the road :whistle:
 
I do not experience pain and fatigue as dangerous. Telling me they are not dangerous is completely beside the point. The "fatigue" (I would challenge it is actually fatigue but that is by the by) I experience chains me to the bed unable to move a muscle and definitely no energy to be anxious. The pain leaves me unable to think, never mind worry about whether it is dangerous in some way.
 
mango said:
The aim of the treament is to get the participants to return to an active life, which means to gradually increase their activity levels. This means doing activities that have been avoided because of symptoms and other kinds of [discomfort, uncomfortable feelings]. However, according to our assessment there is no risk of negative effects of the rehabilitation program
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This would do well as an extra from Alice in Wonderland, maybe said by the White Queen or the caterpillar.

An 'Open Case Trial' reminds me a bit of the 'open mind' that is so open the brain falls out.
 
mango said:
Another recent change is that the Swedish patient organisation RME, who have strongly and openly opposed this project up until now, seem to have flipped.
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Could this flip be a result of the recent and sad passing of J Bergquist? The RME's position as stated on their website is pretty clear that they do not support anything around PACE.

I think this study needs to be watched carefully. Do we know anyone who is signed on as a participant?
Is it possible to get any of the information they might plan to give to participants?

Who is now driving this change? I noticed that the Scientific Advisory board includes a neurologist, a psychiatrist and a rehabilitation specialist. Perhaps patients should be voicing an opinion on who they would find appropriate to be on the advisory board.
 
Acceptance & Commitment Therapy for ME/CFS (Chronic Fatigue Syndrome) – a feasibility study

Highlights
• First trial of ACT for patients diagnosed with ME/CFS.

• ACT can be considered safe and preliminary effective.

• Changes in psychological flexibility are related to improvements.

Abstract
Background
Acceptance and Commitment Therapy has not been evaluated for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to date. However, recent studies indicate the importance of psychological flexibility for well-being in this condition. The present study is a preliminary evaluation of the feasibility of an ACT-based behavior medicine treatment protocol for ME/CFS.

Methods
40 adult individuals, fulfilling the 1994 Centers for Disease Control and Prevention and the 2003 clinical case criteria for ME/CFS, consecutively started an individual 13-session ACT-treatment. Data were collected pre-treatment, mid-treatment, post-treatment, and at 3- and 6-month follow-ups. Linear mixed effects modeling was used to analyze treatment effects on ME/CFS-related disability, psychological flexibility, ME/CFS symptoms, anxiety, depression and health-related quality of life.

Results
80% (32) of the participants completed the treatment. ME/CFS-related disability (d=.80, p<.001) and psychological flexibility (d=1.07, p<.001) improved between pre- and post-treatment and remained stable between follow-ups. Similar results were found for secondary outcomes.

Conclusions
Results indicate that the treatment was accepted by the participants, with a small drop-out rate and was safe with no harmful effects during or after treatment and also efficient with stable improvements in numerous outcomes.
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https://www.sciencedirect.com/science/article/pii/S2212144718301959



ETA: Sci Hub link, https://sci-hub.se/http://www.sciencedirect.com/science/article/pii/S2212144718301959
 
Of ffs, there's no control group! btw I have some experience of ACT (ETA: for depression/anxiety not ME or CFS). It seems to be based on the premise that those who are ill are so because they are trying to live an idea of their life that is no longer relevant, so they need to accept that and commit to living a new life based on their current limitations, but in a way that doesn't let their limitations get in the way.

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).
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Ultimately, it's little different from the CBT usually offered with GET. And the contamination of any subjective outcome measures is likely to be the same.

The whole “I need to get rid of these symptoms in order to move on with my life” is something I am struggling with at the moment and have been for the past 7 years or so. ACT didn't help with that at all, and actually made things worse, because it gets the cause completely wrong, as does regular CBT.

Forcing oneself to do things in the presense of discomfort in the vain hope that you will derive some unexpected meaning from it is futile and possibly dangerous.

I find the statement "There are no studies examining an ACT-based intervention for patients diagnosed with ME/CFS to date." concerning, because it is simply not true. There have been lots of studies, or at least there should have been, because this is the standard "treatment" offered at Fatigue and Pain Management Centre in my bit of mid Wales. If it is true, then what they are doing isn't evidence based and they shouldn't be doing it. Grrrr.
 
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The researchers behind this study are determined in their beliefs that the symptoms in ME don't have a biological cause and that increasing activity means making peoples' lives better. I've read through the research plan and application for ethical approval very thoroughly and it's clear that this is a study about increasing activity. (I read it as a part of writing the series of posts sumarized here)

"results indicate that psychological flexibility, more than symptom intensity, predicts disability (Wicksell, Olsson, & Hayes, 2010). In consonance with these findings, treatments targeting psychological flexibility show promising results for these conditions"

What they seem to forget is that the milder symptoms you have, the more space you have to be pshycologically flexible. If they had a better understanding of ME they would have known that the worse you get, the more you have to make absurd choices and living with having to make these absurd choices means that you very often are interpreted (wrongly) as not very psychologically flexible. The researchers don't understand ME and PEM and therefore they hav messed up correlation and causality. This is a very poorly made study.
 
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Thank you @Lucibee, it is really helpful to hear first hand experiences of therapies. Your description confirms what I had suspected from what I had read of ACT. Like all of these 'change your behaviour' and 'change your thoughts' therapies, I think they can end up doing far more harm than good. They have a sort of unhealthily judgmental, almost religious (in the bad sense) feel to them.
 
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