A qualitative longitudinal study of a health psychological group intervention for patients with ME/CFS, 2023, Keurulainen et al

[Andy]

Full title: ‘I became more aware of my actions’—A qualitative longitudinal study of a health psychological group intervention for patients with myalgic encephalomyelitis/chronic fatigue syndrome

Objectives

To explore myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients' experiences of a health psychological group intervention and its usefulness, non-usefulness or harmfulness for illness management and adjustment.

Design
A qualitative longitudinal study using inductive content analysis.

Methods
Semistructured interviews were conducted with 10 adults. Interviews were conducted before the 16-week intervention, immediately after its completion, and at 3 months after completion.

Results
Participants reported that the intervention was useful and not harmful. The model improved their ability to cope with ME/CFS by providing them with useful information about the illness along with peer support and professional guidance. Participants reported improved illness management and adjustment, which they perceived as an outcome of achieving new ways of thinking, feeling and acting.

Conclusions
Participants viewed the health psychological approach to group intervention as meeting their needs. To achieve better illness management and adjustment, more consideration should be given to supportive interactional processes with peers and healthcare professionals.

Patient or Public Contribution
The intervention was developed to meet patients' needs of finding ways to manage their illness. The research team consulted eight patients with ME/CFS and three clinical centres working with ME/CFS treatment and rehabilitation at the intervention planning stage. Their comments influenced the planning and content of the intervention as well as ethical issues that should be considered, such as potential harm to participants. All participants were informed about the theoretical foundations of the study and the principles guiding the intervention. Participants were not involved in the data analysis.

Open access, https://onlinelibrary.wiley.com/doi/10.1111/hex.13833

 

[Andy]

Despite the usual psych wibbly-wobbly language, I think this is an example of supportive CBT that supports patients adapting to the limitations imposed upon them by ME/CFS, rather than the usual CBT for CFS that demands that patients ignore their symptoms, which is why I have not posted in the psychosomatic research sub-forum.

 

[Shadrach Loom]

There’s still an embedded assumption that ME/CFS patients will need psychotherapeutic help in order to adjust and adapt. And there’s a giveaway suggestion that a middle ground needs to be found between too much and too little rest. Not wholly convinced.

 

[Trish]

Study in Finland involved a group of patients in planning in advance.

An individually planned rest and exercise plan and appropriately paced activities are also recommended.4, 5 It is essential that sufferers learn to listen to their bodies, understand its limits and rehabilitate on its terms. Bed rest/rest alone or progressing too quickly can worsen symptoms.

Historically, ME/CFS has been described by nine different criteria, with differing emphases on symptoms and differing aetiological assumptions about whether the disease is physical or psychiatric. According to those favouring a psychiatric or psychological aetiology, ME/CFS is maintained by unhelpful beliefs about exercise, whereas reconditioning the body can lead to recovery from the illness.6 Thus, CBT therapies were earlier researched with the aim of finding a cure for the illness. Nowadays, the role of CBT in the treatment of ME/CFS is seen differently, that is, not as a cure for the illness but as an aid to illness management, reducing illness distress and promoting adjustment.4

I was concerned to see words like goals and rehabilitation, but it seems like goals were things like learning to pace better, and methods for relaxing, and using peer support, which is fine.

There's all the CBT stuff about changing unhelpful thoughts and homework and setting goals and planning and I spotted a mention of neural plasticity, but on the whole from a quick skim it looks OK to me, particularly for people newly diagnosed who need support in making major life adjustments.
Some of the patients were very mildly affected, eg working full time, or going to the gym several times a week for 20 minutes, neither of which I could do when my ME was mildest. There were also a couple in the group with mod to severe ME who weren't working.

 

[EndME]

Does anybody know how or if this groups of researchers is connected to the likes of Riikka Paasikivi, Helena Liira and
Mari Kanerva?

 

[FMMM1]

Glad to see this +ve received. I wonder though if it would be better if they'd monitored activity pre/post intervention i.e. using actimetry/FitBit type devices.
E.g. that would give a body like NICE reliable evidence to assess these interventions and answer the question - do they provide value for money/should they be funded?

 

[Trish]

Given that the aim of the therapy is to help people adjust to their illness, learn to pace better etc, not to increase activity, I don't think it needs to include actigraphy. That would give a false view to the participants and incentive to the therapists to get them to try to do a bit more to show it's covertly intended to be tested as a treatment. I think that would mess up the study.

I do think, however, that a separate study using the same methodology with the overt intention of testing whether it changed activity levels might be interesting. Though even there, for some patients, the best outcome is that they reduce their activity levels and crash less often, so how do you judge that as a successful or unsuccessful treatment?

 

[Midnattsol]

Given that the aim of the therapy is to help people adjust to their illness, learn to pace better etc, not to increase activity, I don't think it needs to include actigraphy. That would give a false view to the participants and incentive to the therapists to get them to try to do a bit more to show it's covertly intended to be tested as a treatment. I think that would mess up the study.

I do think, however, that a separate study using the same methodology with the overt intention of testing whether it changed activity levels might be interesting. Though even there, for some patients, the best outcome is that they reduce their activity levels and crash less often, so how do you judge that as a successful or unsuccessful treatment?

And more of what? Not all activities I find meaningful would necessarily show as increased activity or feet on the floor on an actometer or fitbit.

 

[Jonathan Edwards]

I was concerned to see words like goals and rehabilitation, but it seems like goals were things like learning to pace better, and methods for relaxing, and using peer support, which is fine.

The approach may well be based on sensible thinking but I think we have to accept that the study tells us nothing useful because the methodology isn't up to it.

 

[rvallee]

longitudinal

16-week intervention

at 3 months after completion

longitudinal

Right.

Participants viewed the health psychological approach to group intervention as meeting their needs

That's very problematic. It meets some needs. Mostly minor needs. It doesn't look all bad, but it gives a very false impression of how useful this is, that this is a replacement for medical care, when it's alternative health care.

And really, it's probably no more useful than a GP pointing the same information in the first place, with no need to employ therapists at all. This is really all about making up for the failures of medicine, it's not the way solve problems.

It may be useful, but it's a very mild usefulness. But at least it's not all bad.

 

[Trish]

I've been thinking more about this since I commented positively earlier today.

I imagined myself being in such a group for 8 two hour sessions spread over 16 weeks having to listen to a bunch of strangers talking about their symptoms and setting goals etc, and having to join in the game, and presumably listening to talks from the therapists about pacing and rest and self compassion and gratitude and positive thinking and goal setting.

Add that to the extra drain on my energy of two hours sitting upright and concentrating and the travel to get there, and walking to the therapy room from my car and all the rest.

I could see myself lasting no more than 2 sessions before deciding I didn't want to be psychologised and therapised and expected to share my thoughts with a bunch of strangers. Nor could I spare the energy and weather the fortnightly crash after each session on top of my job and family responsibilities.

My conclusion. It's a massive waste of everyone's time, with little to show for it. Far better, in my opinion, would be a single session solo with an OT, nurse, or other clinician with real knowledge about pacing, a good leaflet, links to more online resources, and support arranged to educate my family and employer about my limitations and support needs, and help applying if needed for benefits and carers. Add to that access to a well run patient forum, and telephone access to the therapist when needed.

 

[FMMM1]

Wondering how the methodology could have been improved --- I suggested actimetry/FitBit type devices --- seem to recall a thread where other indicators were suggested. Perhaps it would be possible to get more insight [beyond actimetry/FitBit] to see if there were ways to measure --- "has this helped you deal with your illness?"

 

[Midnattsol]

Wondering how the methodology could have been improved --- I suggested actimetry/FitBit type devices --- seem to recall a thread where other indicators were suggested. Perhaps it would be possible to get more insight [beyond actimetry/FitBit] to see if there were ways to measure --- "has this helped you deal with your illness?"

Not an objective one, but measuring quality of life over time ("over time" being very important as to avoid getting people who are only happy to have received "the tools" to help them cope being very optimistic before the tools have actually been put into action to see if they work)

 

[Hutan]

There is no one cure fits all for ME/CFS.

Interested to know what cures help some.

The results of studies on the effectiveness of individual- and group-level cognitive behavioural therapy models (CBTs) in treating ME/CFS have been conflicting.1-10Some studies have found CBTs to be effective

Uh, no.

According to those favouring a psychiatric or psychological aetiology, ME/CFS is maintained by unhelpful beliefs about exercise, whereas reconditioning the body can lead to recovery from the illness.6

ref 6 is Geraghty et al, 'critique of a flawed model' -

Highly selective approach to recruitment - selection based on previous interaction and an interview.

SOMNOtouch NIBPTM (Somnomedics GmBh) continuous pulse-to-pulse blood measurement and an interview (capability, motivation and goal setting) with a psychologist were also implemented to assess suitability for participation in the study.

Participants were 10 patients, nine women and one man, drawn from research groups implemented in 2019 and 2022. Participants were originally recruited from units in different fields of special care, such as rheumatology and neurology, that sought to meet patients' need for managing their symptoms and adjusting to their illness. The participants had been diagnosed 1–3 years earlier and on average had experienced symptoms for approximately 2–5 years before attending the intervention.

Biases due to politeness

Further, as the first author was responsible for collecting the data and delivering the intervention, social desirability bias should be evaluated.35 The fact that the first author got to know the participants during the intervention could have influenced the participants' feedback, through their wanting to please the author and say what they think the author wanted to hear.35

We've talked before how comparison treatments could be used to get better information. So, there could be a patient support group that meets (with or without facilitated chats on specific topics), with participant evaluations of that compared to this special CBT-based, goal setting treatment. And/or compare a 3 session treatment with the 16 session treatment.

I think it would also be interesting to work out the cost of this treatment, and then see how many randomly selected new participants would prefer to do the 16 session treatment versus receiving a booklet with resources and an amount of money equivalent to the treatment cost.

Tracking of dropouts is important too.

 

[rvallee]

Far better, in my opinion, would be a single session solo with an OT, nurse, or other clinician with real knowledge

Group sessions are cheaper. Only reason they're so popular. Healthcare has the same optimization approach to make everything cheaper per patient. It makes sense in a general sense, just not here because they're dividing by zero anyway.

 

[Trish]

Group sessions are cheaper. Only reason they're so popular.

And I'm pretty sure it's a false economy.
A simple calculation:
8 people in a group that meets for 8 two hour sessions. That's 16 hours contact time for 8 people. I'm sure a much more effective result could be obtained with one or two half hour individual sessions each, and a few 10 minute phone calls as required. Less exhausting for patients, and less therapists time needed.

 

[rvallee]

And I'm pretty sure it's a false economy.
A simple calculation:
8 people in a group that meets for 8 two hour sessions. That's 16 hours contact time for 8 people. I'm sure a much more effective result could be obtained with one or two half hour individual sessions each, and a few 10 minute phone calls as required. Less exhausting for patients, and less therapists time needed.

Oh yeah completely false. How much does it cost for a 10 minutes explanation the first time someone sees a GP, the sends them to a proper resource that is accurate? If all they're doing is explaing basic stuff like this.

So much less than this. They're not even comparing correctly, like when they do non-inferiority trials. 0 is non-inferior to 0. It is the same value. Both worthless, but they claim savings from literally doing nothing. One day economists will pore over this and come out wondering what the hell is wrong with this profession. Although, likely AIs will do that soon enough and maybe discover infinite puzzlement.