ExFACTR Study: Exploring the Feasibility of ACT for Children and young people with CFS/ME ... in prep. for an RCT. Crawley et al. Recruiting Jan 2021

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Exploring the Feasibility of ACT for Children and young people with CFS/ME who have been receiving Treatment for more than 12 months or 12 sessions, in preparation for an RCT.

CACH team: Prof. Esther Crawley, Dr Jamie Leveret, Dr Philippa Clery

15% of children/young people with CFS/ME will not recover after 12 months of specialist treatment. ExFACTR explores the use of Acceptance and Commitment Therapy as an alternative treatment for these children. Continuing from the findings of the ExACT study, ExFACTR forms pre-trial work to establish if it is feasible and acceptable to offer Acceptance and Commitment Therapy to children/young people with CFS/ME using a mixed methods approach.

We are recruiting young people (aged 11-18) who have received more than 12 months or 12 sessions of treatment from the specialist paediatric CFS/ME service in Bath from January 2021.
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https://www.bristol.ac.uk/academic-child-health/research/research/cfsme/exfactr-study/

ACT, 'new' replacement for CBT.
A favourite of Trudie Chalder.

@dave30th
 
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Presumably we are seeing an attempt to get in on alternatives to CBT as people beging to realise it is not the magic cure all that it was being sold as.

Is anyone aware of a more detailed proposal for this research or the source their 15% figure? The notice linked to above includes the statement “15% of children/young people with CFS/ME will not recover after 12 months of specialist treatment”, but does not indicate the source.

I am assuming that 15% refers to children treated by the Bath paediatric service that are still on their books after twelve months. The wording seems to imply that the other 85% are ‘recovered’, but I suspect this is misleading. An 85% recovery rate from ME even with children seems very high, and any service would expect a drop out rate including those that refuse treatment and families having completed a course of treatment that feel further intervention from this service is not for them even if their children had not returned to premorbid levels of functioning.

My supposition is that this 15% represents those that have both not recovered and that still believe or want to believe the Bath service can still offer them something, as I am very sceptical that they achieve any where near an 85% recovery rate under any lay understanding of recovery.
 
Peter Trewhitt said:
I am assuming that 15% refers to children treated by the Bath paediatric service that are still on their books after twelve months.
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It did make me wonder about whether they use questionable figures like this in getting ethics approval. If they are treating them I assume this represents people still on the books of the clinic and at one point Crawely was throwing out kids who she didn't believe were compliant. So it feels like a worrying claim.
 
What do you do when NICE throws out GET, CBT and the Lightning Process and invalidates every clinical trial you've conducted? Simple: dig up yet another scammy, psuedo-scientific treatment and use the same discredited research methods to 'validate' it.

ACT sounds like "old wine in new bottles" to me.

You've got to hand it to Crawley. She's a master at ensuring her snout is permanently buried firmly in the trough of taxpayer money.
 
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I couldn't find a trial registration for this via Google. Looking again at the details given, they state
Continuing from the findings of the ExACT study, ExFACTR forms pre-trial work
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so I wouldn't be surprised if this turns out to be claimed as some sort of extension of the previous study, or a service evaluation, or some other way of getting around the normal registration rules.
 
ACT will be a mechanism to help formally redefine " recovery" in paediatrics.

There is a movement towards the more psychological use of recovery as being what we would term adjusting .

Recovery rates quoted by EC have always been high, but then most research seems to be on CF, or the recent construct of CDF ( chronically disabling fatigue) , and we have the oft quoted rates of 80 % recover naturally, but also 80% recover after " treatment" .

Cake and eat it.

I remain hugely disappointed that charities don't call this out.

You can already see this playing out in long COVID too.
 
There seems to be overlap with this study

Exploring Acceptance and Commitment Therapy (ACT) for children and young people with CFS/ME who are still unwell at 12 months
This study is looking at the views of children and young people (11-17 years old) with CFS/ME who are still experiencing debilitating symptoms after 12 months.

We are exploring the views of children, their parents and their healthcare professionals to better understand:

  1. Barriers to recovery
  2. Acceptability and feasibility of Acceptance and Commitment Therapy (ACT)
This has informed the subsequent study ExFACTR (Exploring the acceptability and Feasibility of ACT for children with CFS/ME) which will recruit patients to receive ACT.

Recruitment will start early in 2021 and we will explore the acceptability.
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see https://www.bristol.ac.uk/academic-child-health/research/research/cfsme/exact-study/

Presumably they will be using the same subjects in both studies, so given the subjects are long standing patients of the Bath service there will be a lot of preselecting having gone on, either self selection by the children/families or by the service.
 
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Again? Hey, if at first you don't succeed, just say you did and do the same thing dozens of times over with the same result. S C I E N C E.

I can't get over how nonexistent the bar is in this field. A feasibility study for this is basically as relevant as a feasibility study of whether people can drink a glass of water, there is exactly zero confusion or hesitation as to whether this is feasible, it's done routinely. I don't understand how an entire field of study can sustain itself by only doing small pilot studies, only ever checking whether they can actually do something that's been done many times before.

Nevermind that this is basically the opposite of the CBT paradigm they have been insisting is flawless for decades. Going from "ignore your symptoms, they are an illusion of your brain, fight them, say no to them" to "just accept you have symptoms". When there is no need for basic self-consistency, no oversight, no accountability. This is really all just a jobs program for these people, milking a broken system that can't provide any adult supervision.
 
Peter Trewhitt said:
There seems to be overlap with this study



see https://www.bristol.ac.uk/academic-child-health/research/research/cfsme/exact-study/

Presumably they will be using the same subjects in both studies, so given the subjects are long standing patients of the Bath service there will be a lot of preselecting having gone on, either self selection by the children/families or by the service.
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more info on ExACT (due to finish this month)
Project Details
Description
A qualitative study exploring attitudes toward Acceptance and Commitment Therapy (ACT) as a treatment for children and young people with Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) who have not yet fully recovered after 12 months of treatment.
Layman's description
CFS/ME is a severely disabling condition. Current evidence-based treatments offered to children and young people with CFS/ME are: Activity Management (AM), Graded Exercise Therapy (GET), and Cognitive Behavioural Therapy for Fatigue (CBT-f). However, a significant proportion of young people who do not recover after 12 months of these treatments. There is some evidence that suggest another treatment, called Acceptance and Commitment Therapy (ACT) is likely to be effective in adults with CFS/ME. We want to investigate whether it could be an effective treatment for children and young people with CFS/ME too.

Therefore, this study aims to find out whether ACT is an acceptable and feasible treatment approach for children and young people with CFS/ME who have not fully recovered after 12 months of AM, GET or CBT-f. It is part of pre-trial work to help define the group of patients for whom ACT may be appropriate and help inform a trial to determine its efficacy.
Acronym ExACT
Status Active
Effective start/end date 4/12/19 → 3/12/20
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https://research-information.bris.a...reatment-for-children-and-young-people-with-c

eta: given that a 'significant proportion' have not 'recovered' after a year of GET and CBT which have now been removed as 'treatments' in the new guidelines, and that there is only 'some evidence', uncited, that ACT might be effective in adults, you have to once again question the ethics of proceeding with this new study.
 
Sly Saint said:
more info on ExACT (due to finish this month)

https://research-information.bris.a...reatment-for-children-and-young-people-with-c

eta: given that a 'significant proportion' have not 'recovered' after a year of GET and CBT which have now been removed as 'treatments' in the new guidelines, and that there is only 'some evidence', uncited, that ACT might be effective in adults, you have to once again question the ethics of proceeding with this new study.
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I had missed that, so according to this link the study has been seeing subjects thought out this year and was due to finish on 3/12/20

[added - Am I being over cynical, but was using children already known to their own service a way of recruiting children/families already identified as compliant and of avoiding the need to advertise for subjects, which the researchers may now feel is likely to provoke nation wide interest and concern? Is that there seems to be little published elsewhere on the details of these two studies also a matter of concern?]
 
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Looking at the two links we have for the ExACT study one says the study will run from “4/12/19” to “3/12/20” and the other says “Recruitment will start early in 2021 and we will explore the acceptability”.
 
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