Is it time to ACT? qualitative study of acceptability, feasibility of Acceptance and Commitment Therapy for adolescents with CFS, 2021, Crawley et al

preprint
Is it time to ACT? A qualitative study of the acceptability and feasibility of Acceptance and Commitment Therapy for adolescents with Chronic Fatigue Syndrome

View ORCID ProfilePhilippa Clery, Jennifer Starbuck, Amanda Laffan, View ORCID ProfileRoxanne Parslow, View ORCID ProfileCatherine Linney, View ORCID ProfileJamie Leveret, View ORCID ProfileEsther Crawley

https://www.medrxiv.org/content/10.1101/2021.04.20.21255804v1

 

As a preprint it's possible to add comments, with a sign-up to Disqus, if anybody was minded to.

 

Barriers to recovery and current treatments. There are no current treatments or cures. A small % seem to recover, we don't know why.

Feasibility of doing an RCT. Yeah, loads of dosh to spend on youngsters who may or may not have ME, plenty of subjective questionnaires and nothing objective like actometers....

 

One positive may be the realisation that the one size fits all CBT " treatment" may not be the engaging model previously described .

Again little real understanding or empathy ( how many years has this been going on?)

ACT is the new CBT - handy when NICE have put question marks on the model for adults and there is now literature debunking its efficacy across a wide range of conditions.

It ties in nicely with ECs other are of interest- redefinition of recovery. So much easier at the end of a 6 week block of this with a new questionnaire ........

 

This of course makes no sense. An RCT is needed to see if the treatment has any useful effect.
What on earth do they mean by solving issues around randomisation? The wording strongly suggests that they haven't a clue.
What is the point of investigating timing without whether it works?

 

Yet another study involving children not recovered after the intervention by the Bath CFS/MES specialist service.

Does this proliferation of studies cast doubt on the claim that 85% of their patients are ‘cured’ in the lay understanding of the word? How many of these participants could have previously been scored as ‘cured’ by the Bath understanding of the word on the basis of self reported outcome measures?

• How many of these children previously treated by the Bath service have been involved in other studies?
• What are the implications of pre selecting only children that have received intervention from the service also headed by the lead researcher?
• What are the implications of only using the participants agreeing to more intervention from researchers linked to the clinic that previously ‘failed’ them?
• Have the subjects with a year or more of intervention involving filling in similar or the same questionnaires learned to behave in a way likely to increase the trial’s success on subjective measures?
• Are these preselected subjects more likely to want to please researchers that they have long term direct or indirect links with, especially given on subjective outcomes?
• Will data from the individuals having received this ‘pilot’ intervention be included in other studies?
• What are the implications for the researchers’ motivations, expectations and behaviours using subjects that could be seen as having been failed by a Service they have links too?

Interesting that this preselection of subjects would mean future trials studies involving the same subject grouping are unlikely to have possible meaningful controls, and also interesting that Crawley is setting up subject preferences as an argument against particular experimental design features, in this case randomisation. Hasn’t Crawley previously used subject preferences as a reason for weakening her study design?

 

I've submitted the following comment in haste (awaiting approval):


Clery and colleagues state that “evidenced based treatments are available” for chronic fatigue syndrome. These are listed as Cognitive Behavioural Therapy-for-fatigue (CBT-f), Activity Management (AM) and Graded Exercise therapy (GET).

In 2017 the US Centers for Disease Control and Prevention concluded that there are no effective treatments for CFS, after it re-examined the scientific evidence and scientific removed CBT and GET as recommended treatments [1].

Similarly, the 2020 draft NICE guideline for ME/CFS specifically warns again the prescription of CBT and GET due to the evidence that these therapies are ineffective and potentially harmful [2]. 89% of outcomes in studies of non-pharmacological interventions for ME/CFS have been graded as “very low quality” with a high or very high risk of bias by NICE’s independent experts. No outcomes in any studies of CBT or GET are graded as better than “low quality” [3].

Clery and colleagues cite Nijhof et al (FITNET) [4] for their claim that “at least 15% of children with CFS/ME [sic] remain symptomatic after one year of treatment”. It should be noted that Nijhof et al used the 1994 CDC Fukada diagnostic criteria [5], which is less specific than other criteria as it does not require post-exertion malaise (PEM) as a symptom.

Evidence suggests that most people with fatigue following viral infection will recover within 2 years with no treatment, but a minority with ME/CFS will not recover [6,7]. There is no reliable evidence to suggest that long term outcomes are any better for those who have been prescribed CBT or GET and good evidence to suggest that these integrations are harmful [8].

There is undoubtedly a need for children and adults with post-viral fatigue syndromes and ME/CFS to be given appropriate advice and support to manage and cope with the effects of their illnesses. However, acknowledgement of the very low quality of past studies and the evidence that CBT and GET are neither safe nor effective treatments for ME/CFS should be considered a prerequisite for any research pertaining to the provision of such services.

References:

1. https://meassociation.org.uk/2017/0...ecommended-treatments-for-mecfs-11-july-2017/

2. https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents

3. https://www.nice.org.uk/guidance/gid-ng10091/documents/evidence-review-7

4. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)60025-7/fulltext

5. https://pubmed.ncbi.nlm.nih.gov/7978722/

6. https://pubmed.ncbi.nlm.nih.gov/16950834/

7. https://pubmed.ncbi.nlm.nih.gov/23263024/

8. https://www.bmj.com/content/371/bmj.m4356/rr-0

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Lot of other points that could be raised, which I hope others will make.

[Edit to add - annoying to spot the typos after submitting. Hopefully still makes sense. Trouble with submitting in haste on the ipad in bed. Don't think i can edit after submitting unfortunately.]

[Update: apparently you can edit comments for up to 7 days after they appear so I will try to remember to do that.]

 

Thank you @Robert 1973

 

I don't know why they have said this. There have been dozens and dozens of studies done on it over the past decade or so. It's been used as the basis of treatment at the Pain and Fatigue Management Centre near where I live for years, and I underwent a similar programme for depression in 2016.

As far as I can tell, much of the guided self-help element is based on Steven Hayes's book "Get out of your mind and into your life" [not a recommendation!]

It's supposed to teach "psychological flexibility", but to me that just means "how to lie about how you feel on questionnaires". As usual. :shrug:

[eta: I had a feeling I'd said something similar to this before... and here it is! https://www.s4me.info/threads/swede...ity-study-2019-jonsjö-et-al.4684/#post-148298 ]

 

Those are 100% the researchers' own words and priorities. There is exactly zero chance that anyone, let alone a teenager, would volunteer to say that this nonsense could be efficacious because it is pragmatic, it's too ridiculous to take seriously. They just put their own words in the kids' mouths and people who should know better just let them. This is all they keep doing, and it keeps getting funded and approved because medicine is still incapable of doing anything useful without specialist technology.

All this shows is that psychologists can say whatever they want to participants and write down whatever they want and get away with it, a dumber version of the Milgram experiment. Clinical psychology's solution to the crisis of replicability has been: what crisis of replicability? We're replicating/copy-pasting like rabbits here!

Obviously this is a ploy to give the appearance that this is desired or welcome, in a similar way PACE used their support from A4ME to say they have patient engagement. Moral and intellectual bankruptcy in a nutshell.

 

My question is, might there still be coercion from the institutions supporting the therapists in that if parents do not comply they risk having social services get involved? Because if so this is a very clear and serious problem. It does not allow for parents to make decisions freely.

I say this as I know many have talked about how desperate parents are and that's completely understandable to me but as the years have moved on there is now a lot of information out there that stands against sending children to this type of research and at some point (and I almost don't dare to say it) but parents have a responsibility to do their own due diligence and act accordingly.

I know how desperation can make us loose our good judgment but it's hard to watch this play out endlessly where kids are essentially being brainwashed to believe what an authority figure wants them to without any reference to reality.

This will have repercussions that ripple like a stone in a pond.

There is at least a caution for the BPS cabal. In the '60's young people rebelled against authority only to later in life become the 'greed is good' generation. With luck these young people will grow up to despise all things related to brainwashing by respectable authority figures.

That last bit is possibly just wishful thinking on my part to entertain me while I'm stuck with not much to be entertained by.

 

I really don't like this new format for posting research papers as every quote has the OPs name attached;
ie 'Sly Saint said'.

eta: and I get alerted every time something is quoted from the abstract.

 

Looks like the usual s--t - different words though and we've now got ACT instead of CBT. I recall @Simon M advice i.e. unblinded study (requires) objective controls. E.g. every young person seems to have a smart phone so why not, at the very least, use that to track their movements/activity - give them a fancy phone with some additional features i.e. to track their activity - time spent upright, steps --.

I'm not being rude to Simon here but the people who carried out this study are supposed to be experts - if the basic's of study design are known to non-experts then how come you can publish this?

Was the study paid for out of public funds?

 

Don’t forget the same people have been grooming, oops sorry supporting, these children for at least a year, so it is quite possible that some of these words were used by participants.

 

haven't poor children in Bristol and Bath suffered enough already??

 

People seem to forget the way children learn.
They use language that is given until experience redefines constructs.

So they take a predefined vocabulary and meanings as fitting their situation until it dosnt or other experience redefines language.

This is basic . So yes children describe illness differently from adults. Think about it .

Add in power asymmetry and it is very concerning.

 

It seems like these people have moved away from publishing anything that would be expected to contain actual treatment results.

I guess repetitive qualitative studies are yielding a much more verdant grift this year.

 

This I can believe. Presumably these kids had endured a year of being told their thinking is all wrong. So the shift to being told that 'yes, you really do have a problem that's difficult to live with' must have been a relief.

I agree wholeheartedly with all the criticism posted here but I have mixed feelings about the move to ACT in general.

On the one hand, if ACT comes to replace CBT out in the wild that would be some small improvement. There'll always be pwME who find themselves referred to therapy for whatever reason and in many cases the therapist won't have any in-depth knowledge about ME. In this case, if the go-to narrative changes from CBT 'you're still ill because your thinking is all wrong' to ACT 'you really are ill and there's no cure so let's figure out how to live the best life possible within your limitations', that would be a good thing, or at least a less bad thing.

On the other hand, there's a lot of room for abuse of the concept. Accepting a bad situation outside your control and committing to trying to live as well as possible regardless can be a valid strategy, though it doesn't necessarily require doing ACT. Adopting Buddhist principles, reading the Greek Stoics, or just working it out for yourself may do the job just as well. But in any case there are some additional big ifs that should be met. A&C can be a valid strategy:

if you have had a thorough diagnostic workup to identify treatable alternative diagnoses or comorbidities, and
if you're getting the best possible symptomatic treatments, and
if you're getting enough social acceptance and practical support (benefits, home help, homeschooling, etc.), and
if there's enough good research being done to give realistic hope that the current need to accept being ill won't be permanent.​

Somehow I have little hope that EC & Co's swing to ACT is going to contribute to addressing those ifs. More likely those issues will be ignored and patients told 'we're very generously funding you a course that teaches you how to be content with your lot (online version coming soon) so what else could you possibly want?'