Why Should ACT Work When CBT Has Failed? a Study Assessing Acceptability and Feasibility of Acceptance and Commitment Therapy (ACT), 2022, Crawley

Andy

Andy

Senior Member (Voting rights)
Full title: Why Should ACT Work When CBT Has Failed? a Study Assessing Acceptability and Feasibility of Acceptance and Commitment Therapy (ACT) for Paediatric Patients With Chronic Fatigue Syndrome/myalgic Encephalomyelitis (CFS/ME)

Aims
Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) effects 0.5–3.28% of children. NICE guidance recommends Activity Management, Graded Exercise Therapy or Cognitive Behavioural Therapy for fatigue (CBT-f). Approximately 15% of patients do not achieve full recovery within one year with current treatments. Acceptance and Commitment Therapy (ACT) is an effective treatment in many chronic illnesses. There are no studies investigating ACT for paediatric CFS/ME. This feasability study aimed to assess if ACT is a feasible and acceptable alternative treatment when current treatment has not led to recovery.

Methods
This feasability cohort study aimed to enrol a minimum of 12 participants aged 11–18 yearswith CFS/ME attending the Royal United Hospitals Bath NHS Foundation Trust Specialist Paediatric CFS/ME Service, who were still symptomatic after 12 months or 12 sessions of standard treatment and were offered six to 12 sessions of ACT. Retention and recruitment data were analysed. Participants were asked to complete questionnaires before, during and after treatment. A selection of participants and their parents were interviewed about their experience of the study. Interviews were analysed using thematic analysis.

Results
19 participants (95% of those approached) were recruited. Only 4 participants of this hard-to-reach group did not complete treatment.

In almost all sessions participants reported that they felt ‘totally’ listened to in post session questionnaires (31/33 sessions).

Preliminary interviews (n = 12) indicate acceptability of ACT, with all young people and their parents stating that they thought ACT should be offered to this population. Participants particularly commented that the absence of thought challenging (used in CBT-f) was a positive element of ACT. Participant's openness to try new approaches and altruistic desire to be in a study was noted.

Conclusion
Recruitment data indicate that it is feasible to recruit and retain 11–18-year-olds with CFS/ME to a study offering ACT. Interviews with participants and parents were broadly positive suggesting ACT is an acceptable treatment in this population.

Results indicated that it is both feasible and acceptable to offer ACT to 11–18-year-olds with CFS/ME using this protocol, supporting the prospect of an RCT in this area.

Open access, https://www.cambridge.org/core/jour...elitis-cfsme/938A6D45DE4C98BD28AF6C4B39A96942
 
When reading papers like this, I always have to think back to when I was getting therapy for "school refusal" (actually crippling fatigue, but that wasn't allowed to be real, it had to be a psychological problem) and I treated therapy as some sort of process where I had to go along with whatever the therapist wanted. Make up some problem because there wasn't one. Pretend the therapy was useful. After a while I stopped going because exactly nothing was happening. The therapist was of course thrilled with the progress that was being made and said I need more sessions.

It really puts into perspective how little it means that participants report positive feedback.

They've built this powerful myth of therapy being a solution to just about any problem not yet claimed by other another profession and take a lot of money from gullible or desperate patients or those who are pressured into therapy and don't have the capacity to resist.

Why would therapy treat fatigue? Just the idea is absurd.
 
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Trish said:
And their claim that CBT/GET is currently recommended by NICE.
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ah well according to the RCPCH, NICEs description of what they think GET is, is not what they do. So presumably they now think its OK.

Graded exercise therapy
The NICE guidance now presents an explicit definition of graded exercise therapy (GET) in Box 4, page 32.
Graded exercise therapy is a term used in varying ways by different services supporting people with ME/CFS. In this guideline, graded exercise therapy is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active. This definition of graded exercise therapy reflects the descriptions given in the evidence that was reviewed, and it is this approach that the guideline says should not be undertaken. An individualised approach that should be taken for people with ME/CFS who choose to undertake a physical activity or exercise programme is described in recommendations 1.11.10 to 1.11.13.
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RCPCH view and advice for paediatricians
The NICE definition of GET describes increasing activity in fixed increments which is not how it is commonly implemented in current clinical practice by paediatricians. Instead, paediatricians use an individualised approach to gradually improve physical abilities.

It will be particularly important for paediatricians to note and understand this change, and to discuss this with patients and their families or carers in respect of previous, existing or proposed therapy as they continue to be prescribed.

We fully appreciate that there are differences of opinion on GET. However, it’s important to be clear about the new NICE guidelines and talk through the change with those in your care and their families.
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https://www.rcpch.ac.uk/resources/me-cfs-nice-clinical-guideline-member-briefing

that said, in MAGENTA EC did use fixed increments, so she needs to make her mind up.

reviewer for MAGENTA protocol

"P 8, Lines 4 and 29-30: A progression of 10-20% per week in physical activity is regarded as standard for healthy adults. Other CFS research suggests that progression for CFS patients should be a lot less or at least self-paced with periods of no progression if symptomatic. Can the authors explain why the 10-20% progression was chosen and support this with references from CFS literature?"

Crawley et al's response is:
"2) A progression of up to 20% is the guidance provided by the National Institute of Clinical Excellence1 and is standard practice in the UK. This is also consistent with the PACE trial, the largest trial done to date. We have now included a reference to NICE guidelines and the PACE trial, the protocol now reads: “The intervention will encourage children and adolescents to find a baseline level of exercise which will be increased slowly (by 10-20% a week, as per NICE guidance1 and the PACE trial2)”.
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Trish said:
And their claim that CBT/GET is currently recommended by NICE.
Click to expand...
Specifically:
NICE guidance recommends Activity Management, Graded Exercise Therapy or Cognitive Behavioural Therapy for fatigue (CBT-f). Approximately 15% of patients do not achieve full recovery within one year with current treatments.
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The first sentence is a lie. The other is a different lie. There is no basis to say the treatments have anything to do with any definition of recovery. It is well-acknowledged, and Long Covid has made that beyond obvious, that there is a natural recovery from infections that is irrelevant of any treatment.

Academic publishing is completely broken. False claims make their way onto abstracts and no one cares. I'm not even sure the journal will bother correcting this, they are clearly OK with publishing false claims that are popular.

The pattern has really been confirmed lately: in evidence-based medicine, "good study" = I like the conclusions, "bad study" = I don't like the conclusions. The content, intent, substance, even the treatments, patients and data, are completely irrelevant. Everything is decided based on how fashionable something is, entirely regardless of substance.
 
strategist said:
When reading papers like this, I always have to think back to when I was getting therapy for "school refusal" (actually crippling fatigue, but that wasn't allowed to be real, it had to be a psychological problem) and I treated therapy as some sort of process where I had to go along with whatever the therapist wanted. Make up some problem because there wasn't one. Pretend the therapy was useful. After a while I stopped going because exactly nothing was happening. The therapist was of course thrilled with the progress that was being made and said I need more sessions.

It really puts into perspective how little it means that participants report positive feedback.

They've built this powerful myth of therapy being a solution to just about any problem not yet claimed by other another profession and take a lot of money from gullible or desperate patients or those who are pressured into therapy and don't have the capacity to resist.

Why would therapy treat fatigue? Just the idea is absurd.
Click to expand...
I only tried therapy once for this. I was basically fired by my GP, tried to get healthcare elsewhere and was told this was the only thing anyone could do. I tried it on my own. It was a complete waste of time. And money I didn't have at the time, but it was cheap so whatever.

After a few sessions talking about the reasons I was there, for which psychology has nothing coherent to offer or do, we spent the rest of the sessions talking about a non-existent problem. And only about this non-existent problem. I was very cognitively impaired at the time so did not have the capacity to point out that it was pointless to discuss this.

The therapist, a PhD in training with a professor watching somewhere else, never asked whether this non-issue was an issue at all, how important it was, how significant it was, to which I would have simply replied 0, it's completely trivial. It wasn't why I was there at all, this was not an issue, it was just the first thing that came to mind when the change of subject was brought off.

At the last session I didn't really say anything about the whole thing, just thank you. I wasn't asked either. Did this help? Did this solve the problem? Any problem? Was this any useful? Or even relevant? Literally 0 on all questions, if they had asked. Or, I guess, probably 1 because they usually use 1-10 scales, rarely have an option for 0.

I'm sure the professor thought it went well and the student got a good grade for it. It was completely useless, and neither know it. Only me. They simply don't know when what they're doing is irrelevant because they just don't ask.

That's what happens when a real problem is re-attributed to a fake one: they don't know it's irrelevant, because they don't know what is. I really don't see how psychology has any role to play here, they simply don't have the capacity to be relevant.
 
"Cognitive behavioural therapy. This may be appropriate for some people with CFS specifically those who would find it useful to help manage their symptoms, improve their functioning and reduce the stress of living with a long-term illness."

https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/management/management/

Is the closest to a NICE recommendation that I could find with a quick Google search.
 
I did a google search and found this PDF document produced by the Bath Paediatric clinic, which is Crawley's clinic.
https://www.ruh.nhs.uk/patients/ser...rofessionals/CBT_for_CFS_Therapist_Manual.pdf
CBT for Chronic Fatigue: Therapist Manual
PAEDIATRIC ME/CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK
Starbuck, J., Loades, M.E., & Chapple, K. | 2022

I haven't read it all, but it's clear they are still working with the fear avoldance and excessing symptom focusing model and with setting goals etc.

Edit: It seems they are still conflating CF and CFS.
 
dave30th said:
Yes, I've seen. They suggest that NiCE recommends these for "fatigue" and mention CBT-f. Just to make sure: There is not a separate guidance for fatigue, right? Has anyone come across CBT-f before?
Click to expand...

I am sure I have seen the term CBT-f before and that it is CBT for fatigue, but at present I can’t remember whether it was in the context of research by one of the usual UK BPS suspects or in the context of a British specialist service. Hopefully I will be able to remember more over the next few hours.
 
rvallee said:
I only tried therapy once for this. I was basically fired by my GP, tried to get healthcare elsewhere and was told this was the only thing anyone could do. I tried it on my own. It was a complete waste of time. And money I didn't have at the time, but it was cheap so whatever.

After a few sessions talking about the reasons I was there, for which psychology has nothing coherent to offer or do, we spent the rest of the sessions talking about a non-existent problem. And only about this non-existent problem. I was very cognitively impaired at the time so did not have the capacity to point out that it was pointless to discuss this.

The therapist, a PhD in training with a professor watching somewhere else, never asked whether this non-issue was an issue at all, how important it was, how significant it was, to which I would have simply replied 0, it's completely trivial. It wasn't why I was there at all, this was not an issue, it was just the first thing that came to mind when the change of subject was brought off.

At the last session I didn't really say anything about the whole thing, just thank you. I wasn't asked either. Did this help? Did this solve the problem? Any problem? Was this any useful? Or even relevant? Literally 0 on all questions, if they had asked. Or, I guess, probably 1 because they usually use 1-10 scales, rarely have an option for 0.

I'm sure the professor thought it went well and the student got a good grade for it. It was completely useless, and neither know it. Only me. They simply don't know when what they're doing is irrelevant because they just don't ask.

That's what happens when a real problem is re-attributed to a fake one: they don't know it's irrelevant, because they don't know what is. I really don't see how psychology has any role to play here, they simply don't have the capacity to be relevant.
Click to expand...

My sister-in-law is a psychologist and through her I learned there's basically a diagnosis for every character trait after which a therapist can start charging to cure you of that trait. If that trait is helpful or unhelpful doesn't really matter, billable hours do.
 
Trish said:
CBT for Chronic Fatigue: Therapist Manual
PAEDIATRIC ME/CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK
Starbuck, J., Loades, M.E., & Chapple, K. | 2022
Click to expand...
thread here
https://www.s4me.info/threads/cbt-f...tal-bath-uk-loades-m-e-starbuck-j-2020.16652/
dave30th said:
Has anyone come across CBT-f before?
Click to expand...
yes, Crawley et al have used it a lot.

eta: eg
"UK specialist medical care (SMC) for paediatric Chronic Fatigue Syndrome (CFS/ME) includes behavioural approaches (Graded Exercise Therapy; Activity Management) and Cognitive Behavioural Therapy for fatigue (CBT-F)."

https://www.s4me.info/threads/cbt-r...for-paediatric-cfs-2021-anderson-et-al.21335/
 
My comments in bold

Aims
Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) effects 0.5–3.28% of children. (poster presentation so no need to reference a claim that up 400k UK under 18s could have ME/CFS - and really can't they proof read out effects/affects ?)


NICE guidance recommends Activity Management, Graded Exercise Therapy or Cognitive Behavioural Therapy for fatigue (CBT-f). Approximately 15% of patients do not achieve full recovery within one year with current treatments. Acceptance and Commitment Therapy (ACT) is an effective treatment in many chronic illnesses. (a neat sleight of hand for a non critical audience - start with ME/CFS, then insert a non sequitur reference to chronic fatigue. There is no NICE recommendation Activity Management, Graded Exercise Therapy or Cognitive Behavioural Therapy)

There are no studies investigating ACT for paediatric CFS/ME. This feasability study aimed to assess if ACT is a feasible and acceptable alternative treatment when current treatment has not led to recovery. (so any young person presenting with fatigue, whatever their health status gets put through the GET/CBT mill, and those not left standing = 15% who need something else ?)

Methods
This feasability cohort study aimed to enrol a minimum of 12 participants aged 11–18 years with CFS/ME attending the Royal United Hospitals Bath NHS Foundation Trust Specialist Paediatric CFS/ME Service, who were still symptomatic after 12 months or 12 sessions of standard treatment and were offered six to 12 sessions of ACT. Retention and recruitment data were analysed. Participants were asked to complete questionnaires before, during and after treatment. A selection of participants and their parents were interviewed about their experience of the study. Interviews were analysed using thematic analysis. (so this is a 'failed' cohort - they've been through 12 months of GET & CBT, disappointing the therapists, worrying their parents, and themselves feeling pretty hopeless ? even then the authors still felt they should make a selection of who to interview i.e don't include those who dropped out, nor 3 other families for unreported reasons)

Results
19 participants (95% of those approached) were recruited. Only 4 participants of this hard-to-reach group did not complete treatment. (there was a 21% dropout rate)

In almost all sessions participants reported that they felt ‘totally’ listened to in post session questionnaires (31/33 sessions). ('totally listened to' by questionnaire !)

Preliminary interviews (n = 12) indicate acceptability of ACT, with all young people and their parents stating that they thought ACT should be offered to this population. Participants particularly commented that the absence of thought challenging (used in CBT-f) was a positive element of ACT. Participant's openness to try new approaches and altruistic desire to be in a study was noted. (job done so we'll throw in the fact that that these desperate families were keen to please, shows we acknowledge the problem without having to actually - 'acknowledge the problem')

Conclusion
Recruitment data indicate that it is feasible to recruit and retain 11–18-year-olds with CFS/ME to a study offering ACT. Interviews with participants and parents were broadly positive suggesting ACT is an acceptable treatment in this population. (broadly positive ? so you're not going to tell us what the criticisms were ?)

Results indicated that it is both feasible and acceptable to offer ACT to 11–18-year-olds with CFS/ME using this protocol, supporting the prospect of an RCT in this area. (there's a surprise, grant application no doubt already on its way)

Amended to note there is no NICE recommendation on Activity Management, Graded Exercise Therapy or Cognitive Behavioural Therapy for fatigue !

 
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