Dr Geraghty at the University of Manchester Centre for Primary Care led a team of international experts – from Harvard, Berkeley and DePaul Universities in America – and set about reviewing the cognitive behavioural model of ME/CFS; both the theory attached to it and all the evidence said to validate it.
|The ‘cognitive behavioural model’ of chronic fatigue syndrome: Critique of a flawed model
Health Psychology Open 23rd April 2019
Keith Geraghty1, Leonard Jason2, Madison Sunnquist2, David Tuller3, Charlotte Blease4 and Charles Adeniji1
1University of Manchester, UK 2DePaul University, USA 3University of California – Berkeley, USA 4Harvard University, USA
Funding for this research was provided by the ME Association Ramsay Research Fund.
Review by Dr Keith Geraghty, University of Manchester.
In the early 1990s, UK psychiatrists proposed a model to explain how ME/CFS might begin and be perpetuated. This model is known as the Cognitive Behavioural Model (CBM).
- Read the full paper: The ‘cognitive behavioural model’ of chronic fatigue syndrome: Critique of a flawed model.
It forwards a hypothesis that the illness may begin after an infection or stressful life event; that certain individuals are more susceptible, those with a previous history of trauma, abuse or depression/anxiety; and that the illness is perpetuated by sufferers’ holding on to beliefs that they have a physical illness or that they ‘irrationally’ avoid exercise.
|“The key themes in Keith’s work are improving patient care, promotion of physician well-being, reducing harms, assessment of clinical trials, evidence-based medicine, and improving doctor-patient relations.”|
The theory underpins the promotion of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as potential treatments for ME/CFS.
A number of clinical trials of CBT and GET have been conducted that reported positive results, that CBT/GET improved patients’ symptoms, fatigue, pain, depression, anxiety and quality of life. Other trials reported no benefits.
The largest clinical trial, the PACE Trial, reported a 22% recovery rate and over a 60% improvement rate using CBT/GET.
This trial attracted criticism after key measures were changed mid-trial. Reanalysis of recovery data puts recovery closer to 10% using CBT/GET, little above the natural rate of recovery seen using standard medical care.
|“Most people are not cured by CBT/GET and few find benefit while some find these interventions worsen symptoms and lead to deterioration.”|
Most people are not cured by CBT/GET and few find benefit while some find these interventions worsen symptoms and lead to deterioration. This will not come as news to ME/CFS patient charities, who’ve long argued that psychotherapy is not an appropriate primary treatment for an illness that is not psychological in origin and for which undue exertion can result in increased symptoms and harm.
“An Idealised Narrative Model”
As scientists, however, we were rather astonished to find that there is very little evidence to support the idea that ME/CFS is indeed perpetuated by patients’ beliefs and behaviours. In fact, we found more evidence exists to disprove this theory than validate it.
|“This story is fatally flawed in places. Yet proponents of CBT/GET ignore this and continue to promote psychotherapy no matter what the evidence tells them. This is bad science.”|
Even where we did find some evidence that ME/CFS may be linked to things like personality factors or behavioural changes, the evidence was weak and many of the studies had serious methodological flaws and biases.
And we found that the CBM of ME/CFS is promoted despite contradictory evidence. We termed the model, “an idealised narrative model”. This theory of ME/CFS is promoted without much evidential support or proof.
This story is fatally flawed in places. Yet proponents of CBT/GET ignore this and continue to promote psychotherapy no matter what the evidence tells them. This is bad science.
There is considerable contradictory evidence that refutes core aspects of the CBM. For example, the idea that patients irrationally believe they are physically sick is refuted by considerable and growing evidence of biological abnormalities found in ME/CFS; immunological, neurological and biochemical.
|“The model fails to even consider that post-infectious changes might perpetuate the illness, and instead favours the notion that ME/CFS is sustained by patients being afraid of exercise or activity – a claim that is not evidence-based.”|
The notion that patients are wrong to believe that their symptoms of pain or fatigue are not related to such biological changes is illogical and invalidates the CBM. The model fails to even consider that post-infectious changes might perpetuate the illness, and instead favours the notion that ME/CFS is sustained by patients being afraid of exercise or activity – a claim that is not evidence-based.
To the contrary, most ME/CFS sufferers are keen to return to normal activities, a trait that, for example, differentiates ME/CFS from depression: most sufferers rest or pace themselves to avoid symptom flares or post-exertional malaise. Patients’ actions are in keeping with expected responses to a chronic debilitating illness.
|“There is little scientific credibility in the claim that the psycho-behavioural therapies should be primary treatments for this illness.”|
Evidence from clinical trials, NHS clinics and patient surveys, reveal a consistent pattern, that few patients recover using CBT or GET. Indeed, many patients report deterioration after trying graded exercise therapy.
There is little scientific credibility in the claim that the psycho-behavioural therapies should be primary treatments for this illness. However, the NHS and NICE continue to recommend CBT and GET for people with ME/CFS.
There are few other areas of medicine where the model of an illness is promoted by health professionals and yet is rejected by most patients who have tried the treatments meant to help them. We think it is time health authorities took a closer look at the promotion of CBT and GET and involved patients in decision-making.
Many patients do not want CBT or GET, they want better and more appropriate medical care and more biomedical research to finally discover what is causing their symptoms and thus lead to effective treatments.
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