Professor Sarah F Tyson
This is a corrected proof and has not yet been published.
Description
The guideline aims to improve awareness and understanding of the diagnosis and management of ME/CFS in adults and children. It revised the previous guideline with a paradigm shift away from the belief that ME/CFS is a psychogenic condition. It covers multidisciplinary, person-centred care involving: family/carers; joint decision-making; effective communication; diagnosis and assessment; provision of a support plan; self-management; managing comorbidities and illness fluctuations; long-term support and review; educational and vocational support; and the need for a skilled and knowledgeable workforce.
The most important and relevant change for physiotherapists is rejection of the notion that ME/CFS is caused by deconditioning, ‘dysfunctional illness beliefs’ or ‘exercise avoidance’. Specifically, the guidelines state that people with ME/CFS should not be offered exercise-based treatments, unless the person feels ready to progress. If so, exercise should be overseen by a specialist ME/CFS physiotherapist and include regular review, information about the potential risks, how to recognise and manage a flare-up, and very careful flexible adjustments to activity levels within the individual’s energy limits.
Commentary extracts
The 2021 NICE guidelines for ME/CFS heralded a paradigm shift in the understanding and management of ME/CFS. It recognised ME/CFS as a complex multi-system disease, rather than a psychogenic disorder, and rejected cognitive behavioural therapy and graded exercise therapy as curative treatments.
This acknowledged the ‘patient’s voice’, which had been highlighting the harm done by these treatments for many years.
The guideline committee had strong representation from people with lived experience of ME/CFS (both lay and professional representatives) and sought to integrate people’s lived experience by including evidence from qualitative research within best-evidence reviews.
NICE’s guidance, policies and processes were meticulously followed and closely scrutinised at every stage, as the content was considered controversial by those who were reluctant to accept that ME/CFS was not psychosomatic.
To better understand the needs of two particularly underserviced groups, NICE commissioned studies to examine the experiences of children and young people with ME/CFS, and people with severe/very severe ME/CFS when seeking healthcare.
The result is a high-quality guideline that has changed the understanding of ME/CFS and its management. This guideline has been welcomed by people with ME/CFS, ‘patient’ organisations and most clinicians and services.
Provenance: Invited. Not peer reviewed.
The MEA is funding Professor Tyson to carry out research into practical patient management by developing a clinical assessment toolkit.
“The tools will promote patient-centred care by helping people with the condition and healthcare professionals identify needs and concerns, plan support together, monitor progress and outcomes through NHS ME/CFS specialist services.”