Guidelines in Practice – Key learning points: revised NICE guidance on ME/CFS

April 22, 2022


Dr David Strain defines best practice management of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) highlighting six key learning points.

The article contains information on the new NICE guideline on ME/CFS for health professionals and can be found in the current issue of Guidelines in Practice – a publication that is sent to health professionals in the UK

CFS ME Research Collaborative

Dr David Strain is the Chair of the UK CFS/ME Research Collaborative – a working group of researchers, research funding organisations and M.E charities. He is also at the forefront of the British Medical Association’s work on the long-term impact of COVID-19 and therefore is currently involved in both ME/CFS and long Covid research.

Dr David Strain

Extract

Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a complex, chronic medical condition affecting multiple body systems. At least a quarter of a million people are living with the condition in England and Wales alone. However, this number may underestimate the true prevalence of the condition, which is under-reported as a result of the prejudice, disbelief, and stigmatisation that people with ME/CFS often experience from people who do not understand their illness (including family, friends, health and social care professionals, and teachers)

This scepticism about ME/CFS is the result of insufficient understanding of the underlying pathophysiology of the disease. The lack of a diagnostic test for ME/CFS has led it to be regarded as a ‘hysterical’ or ‘functional’ condition, similarly to how conditions such as multiple sclerosis were viewed before the advent of technology to identify them. In the case of multiple sclerosis, magnetic resonance imaging (MRI) enabled the routine visualisation of sclerotic plaques in a population previously labelled as functional, and helped the biological mechanisms of the condition to gain acceptance. The absence of measurable pathology, the disbelief around ME/CFS has persisted.

Before the COVID-19 pandemic, ME/CFS was increasingly being viewed as a postviral syndrome, with Epstein–Barr virus the most commonly implicated trigger. However, the recognition of long COVID as a condition has led to widespread acceptance that post-acute viral syndromes can cause significant physical manifestations.

The revision of NICE Guideline (NG) 206, Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, has been welcomed by physicians, therapists, and the ME/CFS community alike. It has highlighted the diagnostic uncertainty regarding the condition, the need for personalised goals and, importantly, the need for further research.

About Guidelines in Practice

Guidelines in Practice provides expert and practical information through its evidence-based, multichannel content.

The articles and educational projects provide evidence-based perspectives and content on a range of clinical topics, supporting healthcare professionals earning, best practice, guideline implementation, and local decision-making.

The team works closely with its editorial advisory consultants, plus many organisations, including NICE, to develop content on new and updated guidance and evidence-based practice.

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