Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England

Abstract

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.

What Primary Care Practitioners Need to Know about the New NICE Guideline for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults

“…The 2021 NICE guideline is an important document that will influence the future diagnosis and management of ME/CFS in the UK and beyond [ 15 ]. Both the patient community and health professionals have awaited its publication expectantly because of the recommendations in the earlier 2007 guideline to use GET and CBT as treatments for ME/CFS—interventions which many people with ME/CFS have found ineffective and harmful [ 16 , 17 , 18 ].…”

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“…McPhee et al surveyed the National Health Service-affiliated ME/CFS specialist clinics in England to assess how harms following treatment are detected and to examine how patients are warned about the potential for harms [21]. The researchers sent 57 clinics standardised information requests under the UK's Freedom of Information Act.…”

The Rise and Fall of the Psychosomatic Approach to Medically Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

“…Geraghty and Blease (2019) concluded that the [162]: [162]. The clinics were found to place little or no focus on the potential for treatment-related harm and not one clinic reported any cases of treatment-related harm, despite acknowledging that many patients dropped out of treatment.…”

“…In spite of the evidence that the PACE trial produced a weak or null effect, the investigators fail to acknowledge any faults and strenuously defended their belief that the trial was a robust one that showed significant treatment effects [162,173]. There seems little doubt that the fall from grace of the PACE trial hurried on by a campaign led by citizen scientists and patient organisations was an important step in persuading the National Institute for Health and Care Excellence (NICE) to revise its guidance for ME/CFS.…”