Box 1: Severity of ME/CFS

Unless stated otherwise, these recommendations apply to everyone with myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) regardless of symptom severity. There are also additional considerations in the section on care for people with severe or very severe ME/CFS.

Definitions of severity are not clear cut because individual symptoms vary widely in severity and people may have some symptoms more severely than others. The definitions below provide a guide to the level of impact of symptoms on everyday functioning.

Mild ME/CFS

People with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week.

Moderate ME/CFS

People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.

Severe ME/CFS

People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.

Very severe ME/CFS

People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.