NICE ME/CFS guideline outlines steps for better diagnosis and management

NICE has published its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS)

Chronic Fatigue Syndrome

It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men. The new NICE guideline covers every aspect of ME/CFS in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review.

The new guideline emphasises the need to raise awareness that ME/CFS:

  • is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated
  • affects everyone differently and its impact varies widely – for some people symptoms still allow them to carry out some activities, whereas for others they cause substantial incapacity
  • is a fluctuating condition in which a person's symptoms can change unpredictably in nature and severity over a day, week or longer
  • can affect different aspects of the lives of both people with ME/CFS and their families and carers, including activities of daily living, family life, social life, emotional wellbeing, work and education.

The guideline encourages individualised support agreed through a collaborative approach.

Read full NICE publication statement 

Read full guideline 

“The committee members involved in this guideline have worked particularly hard to ensure care becomes more empathetic and focused on the individual’s needs.”

Baroness Finlay, Vice-chair of the Guideline Committee


APCP is keen to hear from any member who uses NICE guidance to enhance their services for babies, children and young people.

Please contact the APCP NICE Guidelines Officer to share your experiences of putting NICE guidance into practice.


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