'A life I can cope with'. An alternative model of cognitive behavioural therapy (CBT) for CFS/ME, Clark et al., 2021

Abstract
Objectives: This study aimed to explore the experience of cognitive behavioural therapy (CBT) aimed at better management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), rather than increasing activity.

Design: This was a qualitative study using grounded theory analysis.

Methods: Semi-structured interviews were conducted with 13 adults who had engaged in CBT at a specialist CFS/ME service in which CBT is aimed at improved management of the condition.

Results: A model was produced in which participants felt more able to cope with CFS/ME. Reduced fatigue did not seem to be a necessary precondition to managing. This has implications for CBT for CFS/ME.

Conclusions: Specialist CBT for CFS/ME may result in improved coping and reduced distress, independently of changes in fatigue.

Patient or public contribution: The researcher met with a representative from the university's service user advisory group (SAGE), who had lived experience of CFS/ME. They commented on possible questions for the interview topic guide and provided advice on ways in which ethical issues specific to CFS/ME could be considered, for example, prevention of harm during interviews. Second, for quality assurance as part of respondent validation, a proposed draft of the grounded theory was discussed with participants.

https://onlinelibrary.wiley.com/doi/pdfdirect/10.1111/hex.13326

 

The paper is too much for me but based on the abstract seems an 'acceptable' idea for those that might find it helpful.

Of course the devil is in the detail, and I can't manage the detail.

 

I haven’t read this yet but might have a value. My impression is in general CBT for “physical” conditions is designed for a subgroup: people who after being given advice, haven’t adopted it rather than something everyone should need.

 

There's obviously no need for CBT to do that, just tell the freaking truth and stop making stuff up. Mindless self-indulgence. Quit making everything about you.

 

Bolding of the f word mine.

As far as I'm concerned this is completely irrelevant to me if it's about management despite "fatigue".

The focus on fatigue in the abstract doesn't give me any confidence they have a clue.

In fact, having my suspicious nature honed during the long years of illness and protecting myself from people who allege they want to "help" I would say this abstract could be interpreted as yeah, even with fatigue you can gave a meaningful life.

 

I think we can safely add any physical symptom we have have instead of the "fatigue" they have singled out and the end result will always be the same. The whole point of the exercise is to get patients to tick the box at the end to say that they are "coping better".

How long this lasts for and if it is a genuinely beneficial change needs asking

 

At least finally someone notes that the CBT pwME are currently subjected to is based on increasing activity.

But the proposal of any 'new' CBT specifically for ME/CFS would always just be referred to as 'CBT', as it is now.
Even if this one is based on a 'different model' the therapist could use whichever version they chose and no one would be any the wiser.

 

Just to add the complete citation including the pubmed URL:

Clark C, Holttum S. 'A life I can cope with'. An alternative model of cognitive behavioural therapy (CBT) for CFS/ME. Health Expect. 2021 Sep 2. doi: 10.1111/hex.13326. Epub ahead of print. PMID: 34472690, https://pubmed.ncbi.nlm.nih.gov/34472690/

 

I have just read it. I thought there were some questionable things in the introduction with for example referring to Boudewijn van Houdenhove and that they didn't discuss the negative aspects of the Cochrane review enough. However I thought the way CBT was approached was a step in the right direction. It was not focused on fatigue or increased activity and inspired by the new NICE guidelines. So despite a bit of a weird start I'd say not bad at all. I personally hoped that a CGT model would be published based on coping so I'm glad this paper has been published.

 

Fred Friedberg previously devised a cognitive therapy approach that was based on pacing rather than graded activity.

See Table 1 here for the elements of it.
https://www.researchgate.net/profile/Leonard-Jason/publication/225432964_Non-pharmacologic_Interventions_for_CFS_A_Randomized_Trial/links/09e415092d1f0967a1000000/Non-pharmacologic-Interventions-for-CFS-A-Randomized-Trial.pdf

This is a Jason paper which looked at its efficacy against King’s College-style (Chalder, etc.) CBT.

 

I think I've mentioned it before - I had a lifelong paralyzing phobia of spiders, which I only managed to cure a year or so ago in my mid-fifties. I downloaded a CBT app and used it for a few weeks. The main part was a series of pictures, progressing from cartoon spiders to tiny ones to bigger ones to big scary ones, over a few weeks I had to erase them all with my fingers. I just did this part, and ignored the CBT part where I had to rate my feelings, my fear on a scale, my associations with big scary spiders etc etc. I completely ignored that part of the app, didn't use it at all.

So just gradually getting used to spiders did the trick. Then I downloaded another app where I could have a big virtual reality spider sitting on my hand. Then I watched documentaries about spiders - amazing creatures. Then I had a spider in my office, which I regarded as a pet and greeted with "Good morning Incy Wincy" every day.

Point is, treating phobias is supposed to be what CBT is best at, and it isn't even necessary for that. I wonder whether everything CBT is supposed to help with can just as easily be dealt with without the CBT part.

 

Same with Amygdala retraining. Just start calling your spider Amy and you'll be ok.

 

Who for? the specialist who is at risk of losing their job?

 

Can't help but think the reduced distress might be because finally someone accepted they were ill. There are likely many ME/CFS patients that have trauma caused by bad medical interactions at this point so having a neutral one is a good day. As I have been saying to Long haulers recently when they got nothing out of an appointment "at least you weren't harmed. Its a low bar for medicine but one most are failing to clear".

 

Actually, we should aim higher than getting people to accept to live in a hole in the ground. As if this is good enough for us, especially while we are continuously mocked and disrespected for it. Because that's all we deserve, all we're good for. Not satisfied with having a hole in the ground for a home? Well look at mister I-have-impossible-standards.

I'm not sure how much influence this widespread attitude of "there's no point aiming high if we're going to fail anyway" but I would bet that it's the main reason for why medicine is in such a poor state. The endless quest for the smallest, least significant bit of improvement has effectively made everyone comfortable with not making any real progress at all.

You can't always aim for the sky but it's definitely far worse to only aim at the places on the ground that are familiar. This defeatist attitude is a complete downer.