David F Marks, PhD Independent Researcher from Arles, France, has collated research concerning the approaches to treating ME/CFS and focuses on the practices that have been shown to cause harm to people. The full research paper can be read from the link below.
Despite evidence of physiological and cellular abnormalities in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), the dominant therapeutic approach has been cognitive behaviour therapy (CBT) and graded exercise therapy (GET). Patients report distress and dissatisfaction following healthcare encounters based on GET and CBT. A significant body of research suggests that CBT and GET are harmful for many patients with ME/CFS. These findings raise ethical concerns and suggest that more collaborative working between scientists, therapists and patients would be helpful in making scientific progress in this difficult field.
- In light of the findings on patient harms, extreme caution is required in offering patients with ME/CFS treatments such as CBT and GET which involve increased exercise or activity levels.
- The findings on patient harms suggest that treatments using CBT and GET involve ethical dilemmas which practitioners can be helped to resolve by working with patients using a more collaborative approach.
- Clinics should develop standardised protocols for anticipating, recording, and remedying harms, and these protocols should allow for therapies to be discontinued immediately whenever harm is identified.
- Somewhat belatedly, the revised NICE guidance (2020) recognizes the evidence on harms to ME/CFS patients from the use of GET and, to a lesser extent, CBT. The change in guidance is in no small measure a tribute to the researchers and patients who are cited here.
- The attempts by some practitioners to relabel GET in order to continue its use post-NICE-2020 is plainly unethical and must be vigorously resisted.