Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management

Context

The terms myalgic encephalomyelitis (ME; or encephalopathy), chronic fatigue syndrome (CFS), CFS/ME and ME/CFS have all been used for this condition and are not clearly defined. There is little pathological evidence of brain inflammation, which makes the term 'myalgic encephalomyelitis' problematic. Myalgic encephalomyelitis is classified under diseases of the nervous system in the SNOMED CT and ICD10 (G93.3). Many people with ME/CFS consider the name 'chronic fatigue syndrome' too broad, simplistic and judgemental. For consistency, the abbreviation ME/CFS is used in this guideline.

Recent data from the UK Biobank suggest 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. ME/CFS can affect people of all ages. It is a complex, multi-system, chronic medical condition that has considerable personal, social and economic consequences and a significant impact on a person's quality of life, including their psychological, emotional and social wellbeing.

Everyday life for people with ME/CFS, their family and carers is disrupted and unpredictable. Many people with the condition are unemployed, and less than a fifth work full-time. Approximately 25% have severe disease and are housebound or bedbound. The quality of life of people with ME/CFS is lower than that of many people with other severe chronic conditions, including multiple sclerosis and some forms of cancer.

It is not clear what causes ME/CFS. In many cases, symptoms are thought to have been triggered by an infection but it is not simple post-illness fatigue. It lasts longer and even minimal mental or physical activity can make symptoms worse.

There is no diagnostic test or universally accepted definition for ME/CFS. People with the condition report delays in diagnosis, and many healthcare professionals lack the confidence and knowledge to recognise, diagnose and manage it. Fatigue associated with another chronic disease may be confused with ME/CFS and some practitioners are reluctant to positively diagnose ME/CFS when no other causes are found.

People with ME/CFS report a lack of belief and acknowledgement from health and social care professionals about their condition and related problems, which may lead them to be dissatisfied with care and to disengage from services. There are added issues for children and young people if illness makes school attendance difficult, bringing families to the attention of educational and social care services.

NICE produced a guideline on CFS/ME in 2007. That guideline made recommendations on cognitive behavioural therapy and graded exercise therapy. Both treatments are controversial for this condition, and there are disagreements and uncertainty about their effectiveness among both people with ME/CFS and health providers. The evidence for the effects of other commonly prescribed therapies has also been questioned.

There is unequal access to ME/CFS specialist services across England and Wales with some areas reporting very limited access. It is important this inequity of access is addressed.