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

"
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

 

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

 

This study was never really about ACT, it was about CBT/GET. In my opinion, they use the term ACT in a very misleading way throughout the protocol etc.

 

No data yet published, the stated outcome measures are purely subjective questionnaires.

 

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...

 

will this self serving crap ever stop .

 

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

 

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.

 

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.

 

So that’s where mine vanished to! I was wondering what that mouldy, mushy thing was that i tried to hoover up the other day

 

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.

 

@mango
Do you know what was the impetus for reorganising RME
Edit: typos

 

Sounds worrying about RME. Best wishes to everyone trying to improve things.

 

Wouldn't that be an open skull? I thought the problem with open minds is they have a tendency to fill up with trash.

 

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.

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.

 

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.