By David Tuller, DrPH
Professor Trudie Chalder, Professor Peter White and like-minded members of the CBT/GET ideological brigades have appeared desperate in the last year to promote their favored interventions, publishing one shoddy paper after another. This stream of sewage has seemed intended to influence the new ME/CFS clinical guidelines that Britain’s National Institute for Health and Care Excellence (NICE) has been developing since 2017. NICE called off the scheduled August 18th publication of the new guidelines, which formally reject the longstanding treatment paradigm for ME/CFS, because of fierce objections from the cabal of CBT/GET true believers.
High-profile researchers like Professor Chalder and Professor White continue to mislead readers and tart up pathetic findings from both randomized trials and clinical services. Patients long ago recognized that this research base is a mountain of hooey. In recent years, that clear-eyed perspective has become more widely adopted. It is not surprising that NICE now finds itself squeezed between the actual evidence on one side and the braying of eminent pooh-bahs on the other–that’s what happens when paradigms undergo major shifts.
Those on the losing end of the scientific argument–in this case the CBT/GET cabal–are exquisitely aware of their deteriorating position. They know that the new NICE guidelines will have a negative impact on their reputations and ambitions. It is easy to understand why they are so motivated to prevent NICE from publishing the guidelines in their current form.
The new guidelines, for example, could hamper ongoing efforts to extend these psychological and behavioral treatments to all forms of so-called “medically unexplained symptom”–whether through the National Health Service’s metastasizing Improving Access to Psychological Therapies program or through other means. The guidelines will also impair the ability of the CBT/GET cabal to colonize long COVID as yet another category of MUS requiring their forms of rehabilitation rather than a biomedical approach. Just this week, the British Psychological Society proposed the creation of screening tools to identify people suffering from “perfectionism” and other unfortunate personality traits that are purported risk factors for developing long COVID. (I gather this proposal has now been rescinded.)
Perhaps Professor Chalder and her colleagues believe that the volume of studies confers some sort of credibility on the content. That strategy might work in some cases, but not when the research is as misleading as the GET propaganda Professor Chalder and colleagues published in July in the journal Disability and Rehabilitation. (This publication comes after, among other instances, Professor Chalder’s misleading CBT paper last fall in the Journal of the Royal Society of Medicine, to which Professor Brian Hughes and I published a rejoinder; and Professor White’s misleading GET paper in the Journal of Psychosomatic Research, which was corrected to make it clear that the study had null results.)
The Disability and Rehabilitation paper is called “Graded exercise therapy for patients with chronic fatigue syndrome in secondary care: a benchmarking study.” The authors investigated clinic data from 92 attendees who had filled in questionnaires at baseline. The participants were asked to fill out the same questionnaires at multiple subsequent timepoints. The authors compared pre- and post-treatment assessments on a range of measures, including fatigue and physical function.
The abstract presents the positive conclusion that GET is “effective” while leaving out significant amounts of information–in particular, that the number of those responding to the various questionnaires post-treatment ranged from 32 to 67 of the 92 who provided baseline data. Those are pretty big drop-off numbers. It is difficult to interpret findings with confidence when little information is known or provided about why participants failed to respond to questionnaires.
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Conflation of association and causation
Beyond that, the paper is fraught with sloppy argumentation and apparent confusion over the difference between association and causation. It is sad that some people seem to learn nothing despite their many years of experience. The thinking behind GET in the new paper is stale. It could have been written three decades ago:
“Fatigue symptoms experienced by patients with CFS/ME lead to a general decrease in activity which over time causes the body to become weaker and deconditioned. The graded exercise programme aims to reverse this, so the body becomes stronger and reconditioned, thereby reducing symptoms. Core aims of GET are to increase muscle flexibility, muscle strength, and fitness levels so that activities that may be difficult at the start of treatment can be carried out more comfortably in the future.”
Despite no reliable evidence that ME/CFS symptoms have any relationship to the supposed presence of “deconditioning,” Professor Chalder and her colleagues parrot this argument as if it is acknowledged fact–not an unproven and widely rejected theory. This is akin to Trump’s repeated claims that he won the presidential election. Trump did not win the election, and ME/CFS patients do not need treatments premised on the need to reverse deconditioning.
This is 2021, not 1991 or even 2011, when Professor Chalder and colleagues published their first PACE results in The Lancet and could still earn praise and plaudits for their prattle. Deconditioning? Really? I am embarrassed for Professor Chalder; it is cringe-inducing that she and her colleagues have nothing to resort to here but this debunked rationale for GET.
The GET approach is at the core of an international medical controversy. The US Centers for Disease and Control and Prevention, for example, changed its mind on the issue and removed its recommendations for GET several years ago. Yet Professor Chalder and her colleagues have preferred to “disappear” the opposing views. They of course have an obligation to readers and to the medical literature to acknowledge rather than ignore the ongoing dispute.
The new study was not a clinical trial, and there was no control group. In the limitations section, the authors noted that “the lack of a controlled comparison group limits our ability to propose causal explanations about our patient outcomes.”
Exactly. This study can demonstrate at best that patients reported improvements following a course of GET. Because of its design, it cannot demonstrate a causal relationship–specifically, that the intervention itself rather than one or many extraneous factors was responsible for any reported changes.
Yet here is how the authors described what they did: “We investigated the effectiveness of graded exercise therapy (GET) delivered to patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in a routine, specialist clinic.”
And here’s what they conclude: “GET is an effective treatment for CFS/ME within clinical practice.”
This is bullshit. The study documented a chronological association between treatment and outcomes. It is unwarranted to argue that the measured changes demonstrated that the intervention was “effective.” Declaring something to be “effective” is making a causal statement–and the authors have already noted that the study design limits their ability to do any such thing.
This sort of over-interpretation is expected from Professor Chalder, given her past record. In the paper published by the Journal of the Royal Society of Medicine, she and her co-authors similarly made causal assertions while disclaiming the possibility of doing so. It is disturbing that peer reviewers for Disability and Rehabilitation and the Journal of the Royal Society of Medicine overlooked these unjustified exaggerations. First-year epidemiology students at Berkeley know better than to commit such a basic offense against scientific reasoning.
Thank you for continuing to advocate for the removal of harmful practices. It is unbelievable how much damage these practices – now thoroughly debunked – have done to vulnerable adults and children with devastating ME.
It is so discouraging to see these ‘practitioners’ continuing to try to defend their unsupported nonsense, even as we head into the future with many more sufferers expected from long-covid.
Even if the research won’t help me after 31+ years, we cannot let the new people with a post-viral syndrome be made worse by these quacks.
We are fighting for our lives, they for their prestige.
Whilst I recognise that this – as always – excellent blog is more about eminence vs science with respect to exercise, talk therapies are mentioned. As such I found this site very revealing and admire the person concerned for sharing his thoughts and concerns http://www.cbtwatch.com/talking-therapies-psychologising…/
Polly, thanks for linking to Michael Scott’s blog. It is excellent, especially for UK-specific issues like the IAPT program.
Thanks as ever David. More and more people are seeing issues with the reliability of data emerging from CBT studies.
HR organisations also picking this up. Presumably HR departments are picking up the bills for employee support but not seeing a match to claims made about the efficacy of the support. See.
http://hrnews.co.uk/nhs-therapists-are-pressured-to-exaggerate-success/
Thank you David for cutting through the waffle and for confirming again that the CBT/GET crowd continue to be unscientific.
Also I thought that the blog that Polly’s link connects to, makes a lot of sense. I used to be a therapist and had many of those same concerns myself – that therapists are too isolated and may offer a more effective and safer service to their clients, if they were working as part of multi-disciplinary teams.
Intervention data for ME/CFS is not worth the paper that it is written on without control-comparison data.
McDermott et al published an eight week, placebo controlled trial of a natural killer cell stimulant (Biobran) with complete data for 64 participants attending a CFS clinic. The researchers observed: “The marked improvement in the primary outcome measure for both groups [nb: control and treatment] highlights the importance of using a control group in any study evaluating an intervention in CFS. Without this, the data might have appeared to support the efficacy of this intervention.â€
(McDermott C, et al. A placebo-controlled, double-blind, randomized controlled trial of a natural killer cell stimulant (BioBran MGN-3) in chronic fatigue syndrome. Q J Med. (2006) 99 (7): 461−468. https://doi.org/10.1093/qjmed/hcl063)
A York review stated: “Epidemiological studies of the natural history of CFS/ME show high rates of spontaneous improvement. In one study(15) 123/226 no longer met symptom criteria for CFS after 1.5 years and in another(16) 65/103 had improved, but not made a full recovery, after 3.2 years.â€
(Bagnal et al. 2002. The effectiveness of interventions used in the treatment/management of chronic fatigue syndrome and/or myalgic encephalomyelitis in adults and children. NHS Centre for Reviews and Dissemination. University of York.)
The CMO Working Group Report (2002) states: “Of all the people in the community who fulfil criteria for CFS/ME, many experience the majority of their improvement relatively quickly – thus, the distribution of duration of illness is uneven, with greater numbers having shorter than average duration of disease.â€
Therefore any study of an intervention for ME/CFS which includes participants with an illness duration of 3 years or less, might appear demonstrate high levels of improvement without control group data.
Peter that is a very valuable comment. I can’t select and copy the text. Would you mind emailing it to us? CBMEgroup@outlook.com.
Of course there is the issue of fatigue not PEM because 70% of participants were diagnosed using the Oxford criteria, this criteria was also used in PACE. Possible dilution of a patient group using this criteria means some patients may have fatiguing condition but no PEM. They key tells of M.E – Intolerance to exercise and PEM.
They say old NICE Guidelines Criteria was also used in some but again they could cherry pick the criteria as PEM was not an essential requirement.
Thank you David for your hard work in discrediting terrible research. As a community we’ve been pretty traumatised by the Cabal, their research and representation of us as vexatious and abusive because we won’t tolerate this crap.
Chalder’s papers seem to have featured quite a bit in the NICE guidelines review for ME/CFS and, by my count, 11 of the 74 papers evaluated for review question 1 of G (on the effectiveness of non-pharmaceutical interventions) were co-authored by Chalder. It also looks like her name was on 14 of the 180 or so papers included in the whole review….. but it’s about quality rather than quantity, or at least it should be. Hasn’t she learnt that by now?
Only arrogance can explain why they would continue to embarrass and humiliate themselves by presenting such rubbish!
You are kinder than I would be when you call them a “cabal of CBT/GET true believers.” I would feel more generous towards them if I thought they actually believed ME/cfs is a psychogenic disorder or that CBT and GET are efficacious treatments. But I don’t. I think they know as well as you and I that ME/cfs is a biomedical disease and that CBT and GET have, at best, a placebo effect. I think they are hucksters who have built their careers, reputations, and quite comfortable livings pushing a snake oil treatment for profit and that they are desperately trying to keep the gravy train from being derailed.
Just to be clear, I am not saying that CBT and GET as generally practiced are snake oil: just the particular and peculiar type which this bunch have wielded against ME patients and now want to apply to other illnesses of unknown etiology.
Where you and I may see Long Covid as the tragedy of perhaps thousands of people being disabled by a chronic disease closely resembling ME, they see pound signs (£££), and publishing the new NICE guidelines is a threat. They know they are standing on the wrong side of history, but they want to extract as much as possible before they are forced to say “Oops.”
As to how they continue to get away with peddling hooey, they have spent decades laying the groundwork, so that most medical clinicians in the UK have been trained that the biopsychosocial model is factual, so now they scan the abstract and find what confirms what they believe, and they aren’t inclined to read closely or critically. They have also been fed stories about the heroic persistence of these “researchers” in the face of harrassment by unbalanced ME activists, so they ignore voices of dissent.
Plus, the biopsychosocial group have friends and relatives in high places in the Royal College of General Practitioners (RCGP), such as its new president.
“This stream of sewage … this research base is a mountain of hooey. ”
If that mountain of hooey were delivered to my farm I wouldn’t have to buy fertilizer for a very long time.
Claiming this is a biopsychosocial disease makes it easy for the BPS crowd to assert patients are angry, radical militants who make threats against long-suffering researchers. Never mind the truth–most of us are too sick, with barely the energy to roll over in bed, to threaten anyone. Too sick to whip up enough sweat for anger and militancy. The BPS crowd are classic gaslighters–trying to make sane people feel as we’re going crazy. They are angry, radical, militants–we see that with their shutdown of the release of the NICE guidelines. They accuse people with ME/cfs of doing exactly what they themselves are doing, and because news reporters often aren’t critical they get away with it.