An Acceptance and Commitment Therapy (ACT) intervention for Chronic Fatigue Syndrome (CFS)

[trishrhymes]

One thing I can't get my head around at all.

I've never done a PhD, but this is what I understand happens:

A PhD student starts by doing a literature review of the subject they are studying, in this case ME/CFS. They then make a summary of their findings and develop their hypothesis to be tested out of that knowledge.

So where's the author's knowledge base on ME/CFS? Where's the in depth understanding of biological findings? Where's the questioning of the BPS model? Where's the consideration of alternative interpretations of the data? Where's the idea that, given the equivocal results of this experiment with six patients, perhaps the initial (BPS) premise was wrong?

A serious student would never make the crass assumptions about false illness beliefs etc. if they had done their basic reading.

I'm not entirely blaming this particular student. It's the fault of the supervisor who presumably directed them only to psychological studies. But surely a student with any intellectual integrity would dig deeper?

I wonder how many do dig deeper, challenge their supervisors, are told to stick to the BPS model, and drop out as a result. We will never know.

Caution - I may be barking up the wrong tree about this particular study - I haven't read the PhD thesis. My reaction is more based on my reading over the last few months of many extremely poor quality small studies that just try to prop up the BPS model with tiny findings. I think I'm suffering from a severe case of BPS indigestion.

 

[ryan31337]

I've never done a PhD, but this is what I understand happens:

A PhD student starts by doing a literature review of the subject they are studying, in this case ME/CFS. They then make a summary of their findings and develop their hypothesis to be tested out of that knowledge.

Or in a many cases a good student is picked up by an academic, who already has a study to perform in mind that fits into their realm of knowledge. Quite how much of the study (and apparently the desired results) is predetermined varies.

Its worth remembering that PhD studies are largely seen as a right of passage. You're not really expected to produce anything noteworthy, its your first barbecue after all.

 

[Valentijn]

I really don't know much about Acceptance and Commitment therapy so I'm not the best person to give a detailed review of this paper but will post my observations for what they are worth.

The CBT I had in the Netherlands was technically labeled as ACT. But it followed the Dutch CBT for CFS handbook (or whatever it's called), which you are probably a little familiar with. It's pretty much the same as the English CBT, but with a division of patients into active versus passive, and a strong focus on avoiding disability aids.

How is this any different from CBT/GET? Same old shit in another cheap rhetorical suit.

It really is the same. They're both an abusive psychological treatment aimed at undercutting the patient's self-awareness and self-confidence. And apparently they are both the same in inappropriately hijacking the name of a completely different therapy.

ACT differs form CBT in that its less "corrective". Rather than identifying and trying to change the person's 'negative thought patterns', the aim is to help people come to terms with the way they feel and with their situation.

This wasn't the case with the ACT practitioner I saw. When I was upset about a visit to a neurologist, she interrupted me to insist that doctors couldn't help me, instead of letting me talk about how I felt. Abusive ACT for CFS seems to be indistinguishable from abusive CBT for CFS. Maybe we need a new term for both "therapies"

 

[suseq]

Acceptance and Commitment to what? Someone else's viewpoint?

What constantly concerns me is that the questions posed in assessment for these therapy studies are normal subjective reactions - they are not necessarily responses someone who is ill would give.

It is normal to notice your thoughts, feelings and bodily responses. The theory, however, seems to be that we notice too much.

However, trust in your own instincts and what you are feeling mentally and physically, and having that validated and acknowledged is key to coming to terms with any illness.

Trust that you will be believed and treated with respect by health professionals and those you come into contact with is fundamental for wellbeing, but it is not a cure.

Pseudo belief in what you're experiencing achieves the opposite. It is patronising and demoralising, and damages trust.

Sadly ACT seems to be an extension or reframing of CBT, and just another way of saying 'we don't believe you'.

If any of these therapies were carried out with honest integrity then they maybe supportive, but to reframe normal thoughts and feelings as 'negative' or 'unhelpful' is simplistic and unjust.

 

[Snow Leopard]

Acceptance and Commitment to what?

Being disabled and in pain for the rest of your life.

 

[Countrygirl]

Being disabled and in pain for the rest of your life.

'Acceptance and Commitment' sounds like the title to an article on forced marriage to me.

 

[trishrhymes]

Or in a many cases a good student is picked up by an academic, who already has a study to perform in mind that fits into their realm of knowledge. Quite how much of the study (and apparently the desired results) is predetermined varies.

Its worth remembering that PhD studies are largely seen as a right of passage. You're not really expected to produce anything noteworthy, its your first barbecue after all.

Perhaps I was a little over ambitious with what a PhD student can do - I realise most probably work from a hypothesis already presented to them by their supervisor, but surely they should have to do deep background reading and be prepared to challenge, or at least raise questions about what they find.

I agree most will not come up with noteworthy discoveries - I guess I'm criticising the journals here, rather than the students and their supervisors, for being prepared to publish such lightweight 'research'. Maybe there should be a separate lower tier of journals specifically labelled as publishing summaries of PhD students' work, with the understanding that most of it is junk.

 

[slysaint]

Maybe we need a new term for both "therapies"

Bullying?

 

[Valentijn]

Bullying?

Eh, maybe something a bit more technical and specific

 

[A.B.]

Eh, maybe something a bit more technical and specific

Denying reality to please the therapist?

Is that specific and technical enough?

 

[Dolphin]

If change is deemed reliable, it can then be further evaluated as to whether it is clinically significant: that is, whether the individual has moved from being within a range of scores typically obtained by a clinical sample to a range obtained by a non-clinical, healthy sample.

I'm not sure if that is a good definition of clinically significant. It seems quite demanding: that you need to achieve scores in the range of a nonclinical, healthy sample to achieve a clinically significant result. I wonder could this in general lead to dodgy "normal ranges" that don't really represent the scores of healthy people.

 

[Dolphin]

Small point: one person had a score of more than 33 on the Chalder fatigue questionnaire at follow-up which shouldn't be possible (they said they used the 11-item version).

 

[Dolphin]

There are 3 Chalder fatigue questionnaire scores (Likert scoring) of under 11 (from 2 people) and not just a little under 11. This again shows how it can be problematic to use Chalder fatigue questionnaire scores in intervention studies and compare them to healthy norms. Healthy people score 11 on this scale: they say they are the same as usual/similar on the 11 questions, scoring one for each question. So the scores of under 11 are the equivalent of the people saying their fatigue is better than that of healthy people which is pretty ridiculous.

 

[Dolphin]

With the Fitbit data, person 3 goes from around 1000 steps per day to 15,000 steps postintervention and at follow-up. I would say this is a very unusual result in CFS from reading a book.

 

[Dolphin]

Generally there were more improvements than disimprovements. However not for everything:

Scores on the SF-12 subscale indicate varying levels of functional impairment, which appeared to decrease [i.e. get worse] at post intervention in five participants but was not maintained at follow up.

SF-12 Physical Function subscale (Ware Jr, Kosinski, & Keller, 1996).

The SF-12 is itself a short version of the SF-36, a generic and widely used healthrelated- Quality of Life measure evaluated for use within general population samples as well as across a number of health diagnoses. Participants are asked to indicate on a three point Likert scale (0 = not limited at all, 5 = limited a little and 10 = limited a lot) the extent to which their health limits their ability to participate in 10 activities, such as ‘Lifting or carrying groceries’. Scores range between 0 and 100, with higher scores indicating greater limitations.

 

[Dolphin]

Where change was otherwise noted, participants were able to give detailed examples of applying strategies and real life change, including job changes and direct efforts to increase valued activity (physical activities and activities with family), indicating good engagement with and comprehension of the material, adding support to the validity of the results.

Doing more isn't necessarily better in ME/CFS. Often people would be better to do less.

 

[Dolphin]

Good that the practicalities of the therapy are discussed.

Half of the participants noted that the timescale of the intervention was demanding: two participants had a week mid-intervention where data collection was ongoing but no additional reading was introduced. These difficulties were notably exacerbated by the participant’s cognitive symptoms of CFS including poorer memory, attentional ability, and increased mental fatigue. Despite these difficulties, participants spoke about revisiting the text in their own time, indicating that they saw some value in it for managing their CFS in the longer term, but that the format of the intervention, in terms of cognitive demand and time, may be difficult – the implications of this are considered further in the discussion. Four participants recommended this text to others with CFS, indicating good acceptability of the content of the intervention.

 

[Dolphin]

Previous interventions have included increased activity as a target for intervention: physical activity has beneficial effects on general health and mood (Penedo & Dahn, 2005), and the more specific processes of building up physical strength and resilience are thought to be important for a positive prognosis with CFS (White et al., 2011). Nonetheless, interventions specifically targeting activity levels are controversial, with detrimental effects noted by a proportion of the CFS community. Increased activity was not an explicit focus of this intervention, and there was a limited ‘dose’ of intervention in terms of time (6 weeks) and format (guided bibliotherapy), yet there was a notable increase in physical activity for some participants. Within the ACT model this change in activity could be understood to arise from increased commitment to engage in valued behaviors, reflecting scores on the ELS. From this perspective, an increase in engaged living is a key outcome in its own right, which adds further promise to this approach.

The 1st sentence in this is a bit annoying: increased physical activity does not necessarily help with their health and mood of people with CFS.

But if the therapy is more about people prioritising what is important for them rather than "wasting" a lot of energy on exercise, energy to which they may ill be able to afford to use, that could be good.

 

[Dolphin]

Self-reported functional impairment and symptoms Focusing instead on second order change, symptom reduction is not a primary goal of ACT, although it is commonly noted as a secondary benefit. The overall trend within this study was one of decreasing fatigue throughout the intervention, largely maintained at follow up (with participant five being the notable exception). The change in fatigue scores mirrors the increase in activity, and although there isn’t a clear pattern across participants about which preceded the other, it seems probable that they might be interlinked, with increased activity likely to have a positive effect on other systems such as sleep, mood and energy (Penedo & Dahn, 2005).

Increased activity doesn't necessarily improve sleep, mood and energy in CFS. Also sleep and mood were not measured in this study.

 

[Dolphin]

Other limitations of the study design include the potential for selection bias given that individuals volunteered themselves to the study; however, there is little evidence to suggest that this sample was systematically atypical in comparison to the wider client group, although it is not known how individual personality traits might have impacted on the complex results.