By David Tuller, DrPH
What is going on with Professor Esther Crawley, Bristol University’s methodologically and ethically challenged pediatrician and grant magnet? And why is she still disseminating misguided views about treatments for vulnerable children? Haven’t kids suffered enough from the discredited claims of the GET/CBT ideological brigades?
Just last week, the East Kent Hospitals University NHS Foundation Trust responded immediately to an appeal from the ME Association about its potentially harmful guidance on graded exercise therapy for ME/CFS, as I wrote about here. With profuse apologies, the trust removed the offending document. But Professor Crawley seems to be heading in the other direction. She and colleagues have just published a conference abstract that was out-of-date the moment it appeared.
The abstract discussed a feasibility trial of an intervention called Acceptance and Commitment Therapy, an outgrowth of cognitive behavior therapy, for pediatric patients. It appeared in a June volume of BJPsych Open, a journal published by the Royal College of Psychiatrists. (This organization’s noble name shouldn’t obscure the fact that it is essentially a trade union that promotes and protects the economic, professional and political interests of British psychiatrists.) The conference was the Royal College’s 2022 International Congress, which took place last month. Here’s the title of the abstract: “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).”
And here’s how the abstract begins: “Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) effects 0.5–3.28% of children. NICE [National Institute for Health and Care Excellence] guidance recommends Activity Management, Graded Exercise Therapy or Cognitive Behavioural Therapy for fatigue (CBT-f).”
First of all, the NHS now calls this clinical entity ME/CFS, not CFS/ME. Only committed members of the GET/CBT ideological brigades continue to use CFS/ME, whether out of petulance, obstinacy or a pervasive refusal [bonus points if you chuckled at this phrase] to acknowledge that attitudes to the illness have changed. Second, the higher end of that prevalence range seems ridiculous. In her research, Professor Crawley has routinely conflated chronic fatigue and the clinical entity under discussion. There is simply no credible evidence that 3.28% of children have ME/CFS–at least that I know of.
(Professor Crawley has accused me of “libelous blogging,” but has never responded to my requests for an explanation, nor has she retracted the accusation. So I choose my words especially carefully when I write about her egregious methodological and ethical missteps.)
Finally, the recently adopted ME/CFS guidance from NICE has repudiated the recommendations in the agency’s 2007 version–the one apparently referenced by the abstract. This important new document was released at the end of October; the conference abstract was published last month. Professor Crawley likely dislikes the new guidance, since it essentially indicates that her previous research is sub-par—something I have documented in post after post. But that is no excuse for publishing debunked advice. In any event, the 2007 NICE guidance highlighted CBT—not CBT-f, which seems to be the name of the version promoted by Professor Crawley and her colleagues at Bath’s clinical service.
Next, the abstract notes that “approximately 15% of patients do not achieve full recovery within one year with current treatments.” This is quite a surprising statement. It would be remarkable if 85% of children with actual ME/CFS—as opposed to chronic fatigue—not only improved their condition but achieved “full recovery.”
The abstract is apparently derived from a study submitted to BMJ Paediatrics Open last April and published in early October. In other words, the paper was submitted after NICE published its draft guidance in November, 2020, but before the final version was released. Interestingly, the study cited a pediatric prevalence of 0.55%. Providing a range with an upper figure of 3.28% seems to have been an addition made specifically to the abstract, for unexplained reasons. The article also appears to indicate that the 85% figure in the abstract comes from a Dutch study called FITNET, whose reported findings cannot be taken at face value.
I have previously written about this trial, and a UK version led by Professor Crawley; results from the latter have not yet been published. Gatineh & Vink published a counter-analysis of FITNET data called “FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery in Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A Review.”
In the FITNET trial, the “recovery” measure was a composite of several outcomes. Investigators reported a so-called “recovery” rate of only 63% at six months, not 85%. For one of those outcomes, fatigue severity, 85% of participants met the “recovery” threshold at six months. Twelve-month data were provided, but the FITNET authors did not publish “recovery” rates for that time-frame, as far as I can tell. (It is, of course, always possible that I missed something; if so, I hope someone enlightens me on the matter and I will be happy to correct the error.)
In any event, these “recovery” criteria were selected post-hoc rather than being pre-designated. It is easy to concoct attractive findings if you decide how to assess the numbers after reviewing all of them. So it shouldn’t be surprising that the metrics selected were extremely weak. Patient advocates Tom Kindlon and Joan Crawford critiqued the study and its “recovery” claims in cogent letters to The Lancet (here and here). Even two of the PACE authors, in an accompanying commentary praising the Dutch study, referred to the “recovery” criteria as “liberal” and “not stringent.”
Beyond that, the Dutch investigators declined to include in the FITNET report their findings for a key objective measure—how much patients moved, as measured by an actometer worn at the start and end of the trial. Investigators are more likely to omit findings when the results are poor. Sure enough, the Dutch team had null results for that outcome, as they reported subsequently in a manner that ensured little attention was paid to them. (Null findings for actigraphy influenced the decision by the PACE trial authors to drop it as an outcome measure, as explained in this excellent blog from Lucibee.)
To suggest, based on these meager data, that 85% of children attained “full recovery,” as the abstract does, is bogus—but not unexpected, given Professor Crawley’s impressive track record for seriously flawed research claims and her uneasy relationship with facts. (Just one example of the latter–at a public lecture, Professor Crawley informed me that Bristol University had sent me a cease-and-desist letter. This was untrue.)
Unfortunately (or perhaps fortunately), I could not find a mention of the abstract or research in the program for the 2022 conference. Maybe Professor Crawley’s team did not end up presenting their work? Maybe it was a poster presentation? Who knows? In any event, it found its way into the published record of the event, so the misinformation will be available to all.
More Bonus Points: What classic 19th-century novel begins with these family lines? “Properly designed clinical trials are all alike. Every bogus clinical trial is bogus in its own way.”
Professor Crawley admits that CBT for pediatric ME patients is a failure?
That is a stunning admission, and without a reference. In fact, there are no references for the article, or rather, my impaired brain could not find any. For decades we have been told that *everyone* needs magic CBT (and exercise). Now suddenly, maybe not.
If ME is an exception, that needs to be shouted from the rooftops, not quietly buried in a conference supplement.
Let us keep an open mind. As a Clinical Psychologist with ME I can say that CBT was of no help to me, nor would it be for most folks with ME. However ACT , acceptance and commitment therapy, gave my life meaning again. It allowed me to acknowledge my losses, to grieve them and to use mindfulness to try to identify value and purpose in my new ME life. It’s not about challenging your negative thoughts, it’s about moving towards acceptance of your life as it is and committing to living it optimally through identifying your values. It is the therapy I would most recommend for people with ME (or any other chronic illness). Thanks for reading.
Managed a wry smile at pervasive refusal, does that earn a single bonus point.
It is interesting that many of Prof Crawley’s more recent ME/CFS research proposals involve children who have not recovered following treatment at her Bath clinic.
I wonder if she has increasingly been finding it difficult to recruit new research subjects. Certainly the fact that she has been previously known to surreptitiously elide feasibility study subjects into results presented for for a full study, might seem to suggest this is the case. That she does seem to have a ready supply of treated but unrecovered patients, does lead one to ask is her clinic achieving the recovery rates her published work might suggest?
As well as an apparently ready supply of unrecovered patients, there may be other advantages to using children who have been through the Bath clinic’s programme. Children and families willing to participate in research under the auspices on the head of the clinic that could be said to have already ‘failed’ them must have a degree of personal trust/belief in their clinicians, also they have had six months or longer of training in the conceptual framework/approach to ME/CFS favoured by the researchers.
I am sure that trusting and pre trained subjects are very useful in achieving positive results on subjective outcome measures, and they already know the right things to say when asked more open ended questions.
Thank you, David, for continuing to be our ME/CFS advocate, taking each new paper and insisting it be factually correct and accountable and noted properly.
It’s amazing how often the weeds return. I wish someone at a very top level would find something that permanently kills the roots of the misinformation.
[quote:
All happy families are alike, but every unhappy family is unhappy in its own way (Leo Tolstoy, Anna Karenina, 1878)]
Having the misfortune to live in West Dorset, a complaint to PALS about the lack of treatment resulted in the offer of a referral to the notorious Crawley for my 15 yr old son.
The NHS OT had mentioned ACT to us, but the sum total of support offered was to “look it up on You Tube.”
The paediatrician offered, as though it was the best thing in the world, “a referral to the world-renowned professor Crawley.”
Given how adamant the paediatrician had been about doing nothing, I suspect Crawley is scratching about for new blood.
We declined, on the basis that
1. Chronically unwell people cannot get to Bath. It’s a 5 hour round trip FGS.
2. Hell would freeze over before we would consort with the likes of Crawley.
With 4 decades of ME under my belt, I know the enemy.
This paper -https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5332912/ – that is cited in the BMJ Paediatrics Open paper, appears to suggest a potential modification to ACT for pain in children that involves them imagining a ‘pain monster’ that’s responsible for some of their thoughts.
So I wonder, could ACT for some paediatric ME/CFS patients involve suggesting to them that a fatigue monster is responsible for thoughts that tell them to stop functioning as they used to and to restrict activities they used to enjoy?
I was made aware of ACT when a neurologist I was seeing for properly diagnosed SFPN via punch biopsy ran out of road. I was an ‘authentic patient’ for a while there but when he no longer had answers it was “try my new therapy which I’ve been researching called ACT”. “What does ACT stand for?” I asked’ “Err I can’t remember that ..it’s something to do with accepting the situation you’re in”. “I think after 50 years of this I’ve accepted it thank you”.
I looked it up. Ironically, given the neurologist was very keen to say it had nothing to do with the PACE Trial (even he had heard about that I suppose… also knowing it was ‘red flag’ territory for someone with an ME diagnosis), it was a trial headed by Chalder.
Unsurprisingly, & most patients will be more than aware of this, neurologists are on the front line when it comes to using the ‘BPS model’ to hide behind their own ignorance. The interlinking of neurology and re-hashed concepts like ‘ACT’ is a real concern to patients, not only those with ME but those I’ve come across on SFPN forums. Therefore it is of no surprise to me that Crawley is trying to peddle ACT for children. What is it the Jesuits say: “Give me a child …… “.
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Is CFS/ME going to be offered as a fertility treatment then?
If it effects up to 3.28% of children already, who knows how many could be produced under laboratory conditions!
Incidentally, I had a pleasant few weeks’ of sessions trying very hard to disabuse a young woman of her belief that complex diseases can be cured just by giving up and stopping bothering doctors, but, I’m afraid she proved to be incurably resistant to common sense treatment. Such a tragedy in one so young. I think ACT must result in many deaths due to undetected diseases, as was the case with another young woman in the psych ‘recovery unit’ with me, who was given a hard time for being a nuisance neurotic, until she died of cancer soon after I was discharged as a hopeless case.