Why Graded Exercise Therapy and Cognitive Behaviour Therapy are Controversial in Chronic Fatigue Syndrome

Commentary by Michiel Tack

Sharpe and Greco ask the interesting question of why cognitive behaviour therapy (CBT) and graded exercise therapy (GET) are controversial in the field of chronic fatigue syndrome (CFS).

One reason is that the type of CBT prescribed for patients with CFS differs from the CBT used in other illnesses. CBT in CFS assumes that patients’ medical condition is reversible through cognitive and behavioral changes. In some trials, participants were encouraged to no longer see themselves as CFS patients.1 If persons suffering from cancer or multiple sclerosis were told that CBT could reverse their illness, one might assume this treatment would be controversial as well.

A second reason is that CFS is considered to be an “exertion intolerance disease”.2 The most characteristic symptom of CFS patients is not fatigue but post-exertional malaise. This means that patients suffer a relapse when they exceed their activity limit. If CFS patients try to push through and do more, they report getting worse.3 This is however what treatments such as GET and CBT aim to provoke. Patients are instructed to increase their activity level time-contingently and to no longer respond to an increase of symptoms by resting. Most of the randomized trials have not adequately addressed the possible harms of GET and CBT but in multiple surveys, patients report to have been harmed by this approach.4

A third reason is that both GET and CBT label characteristic CFS symptoms as unhelpful cognitive responses.5 When CFS patients, for example, report that physical activity makes their symptoms worse, this is seen as maladaptive avoidance behavior rather than a feature of the illness. When patients think their illness is awful and feel overwhelmed by it, this is labeled as ‘catastrophizing’, even though CFS patients have been found to be more functionally impaired than those with other disabling illnesses. And when CFS patients suspect they are suffering from a yet unknown biological illness, this is described as an unhelpful somatic attribution. With GET and CBT, CFS patients are encouraged to view their symptoms as the result of stress, anxiety or deconditioning, even though scientific evidence for such hypotheses is absent.

A fourth reason why GET and CBT are controversial is that, despite being frequently prescribed, these treatments are not effective in patients with CFS. Randomized trials demonstrate that objective outcomes such as work resumption, disability payments, actigraphy, exercise testing, and neurocognitive functioning do not improve after GET or CBT.6 Studies show moderate improvements on subjective outcomes such as fatigue questionnaires, but at long-term follow-up, there are often no longer significant differences in outcome between patients who received GET or CBT and those who did not.7 Critics claim that researchers have wrongly focused on the short-term improvements on subjective outcomes to assess the effectiveness of GET and CBT. They argue that because of a lack of blinding and an adequate control condition, these trials should focus on objective outcomes as these are less prone to biases.8 To resolve the controversy of GET and CBT further scrutiny of these trials is needed.

[1] Bazelmans E, Prins J, Bleijenberg G. Cognitive Behavior Therapy for Relatively Active and for Passive Chronic Fatigue Syndrome Patients. Cogn Behav Pract. 2006;13(2):157-166.

[2] Institute of Medicine, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, The National Academies Press, Washington, D.C., 2015.

[3] Institute of Medicine, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, The National Academies Press, Washington, D.C., 2015.

[4] Kindlon, T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111. Available at: https://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx

[5] Tack M. The risk of labelling CFS symptoms as unhelpful cognitive responses. Clin Child Psychol Psychiatry. 2019. https://doi.org/10.1177/1359104519853849

[6] Vink M, Vink-Niese A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018 Oct 8;5(2):2055102918805187.

[7] Sharpe M, Goldsmith KA, Johnson AL, Chalder T, Walker J, White PD. Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial. Lancet Psychiatry. 2015 Dec;2(12):1067-74.

[8] Vink M, Vink-Niese A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018 Oct 8;5(2):2055102918805187.

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