Monitoring treatment harm in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: A freedom-of-information study of National Health Service specialist centres in England
Doctors with M.E. Honorary Fellows, Professor Brian Hughes and Tom Kindlon co-author important research investigating the reporting of treatment-related harm in ME/CFS following the use of graded exercise therapy (GET) and Cognitive Behavioural Therapy (CBT).
Although there remains controversy around the use of these treatments in ME/CFS, no treatment-related harm was reported. Given previous findings of patient deterioration, this suggests a need for change in NHS specialist centres that treat ME/CFS.
“In the absence of any evidence that clinics systematically record or even screen for harms that might arise from treatment for ME/CFS, clinics should ideally avoid making assumptions that the therapies they offer are harmless because of their nature.”
The use of graded exercise therapy and cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome has attracted considerable controversy. This controversy relates not only to the disputed evidence for treatment efficacy but also to widespread reports from patients that graded exercise therapy, in particular, has caused them harm. We surveyed the National Health Service–affiliated myalgic encephalomyelitis/chronic fatigue syndrome specialist clinics in England to assess how harms following treatment are detected and to examine how patients are warned about the potential for harms. We sent 57 clinics standardised information requests under the United Kingdom’s Freedom of Information Act. Data were received from 38 clinics. Clinics were highly inconsistent in their approaches to the issue of treatment-related harm. They placed little or no focus on the potential for treatment-related harm in their written information for patients and for staff. Furthermore, no clinic reported any cases of treatment-related harm, despite acknowledging that many patients dropped out of treatment. In light of these findings, we recommend that clinics develop standardised protocols for anticipating, recording, and remedying harms, and that these protocols allow for therapies to be discontinued immediately whenever harm is identified.
McPhee, G., Baldwin, A., Kindlon, T., Hughes, BM. Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England. Journal of Health Psychology 2021; 26(7):975-984 https://doi.org/10.1177/1359105319854532
Prof. Brian Hughes
Professor of Psychology, Specialist, Evidence-Based Policy and Empiricism, National University of Ireland, Galway, Member, HSE (Ireland) National Working Group on ME, Science Advisory Board, DecodeME, Scientific Advisor, Hope 4 ME & Fibro Northern Ireland, Chair, Global Research Initiative, International Prader-Willi Syndrome Organisation