symptom management for people with ME (myalgic encephalitis)/chronic fatigue syndrome (CFS) - rest and sleep

Last edited 11/2021 and last reviewed 11/2021

Rest and sleep

Advise people with ME/CFS:

• about the role of rest in ME/CFS

• that rest periods are part of all management strategies for ME/CFS

• how to introduce rest periods into their daily routine, including how often and for how long, as appropriate for each person

• that relaxation techniques at the beginning of each rest period could be helpful

Give people with ME/CFS personalised sleep management advice that includes:

• explaining the role and effect of sleep disturbance in ME/CFS

• identifying the common changes in sleep patterns seen in ME/CFS (such as broken or shallow sleep, altered sleep pattern or hypersomnia)

• developing good sleep habits

• taking into account the need for rest in the day, and balancing this against how the person is sleeping at night

• introducing changes to sleep patterns gradually.

If sleep management strategies do not improve the person's sleep and rest, think about the possibility of an underlying sleep disorder or dysfunction and whether to refer to an appropriate specialist.

Review the use of rest periods and sleep management strategies regularly as part of the person's care and support plan

Definitions:

Care and support plan

• the personalised collaborative care and support plan is developed by the ME/CFS specialist team based on a holistic assessment. It is the basis for other assessments and plans in areas such as social care, energy management, physical activity, physical functioning and mobility, cognitive behavioural therapy and dietary management

Energy management

• a self-management strategy that involves a person with ME/CFS managing their activities to stay within their energy limit, with support from a healthcare professional

Exercise

• Exercise is planned, structured, repetitive and purposeful activity focused on improvement or maintenance of 1 or more components of physical fitness. Exercise is a subcategory of physical activity

Flare-up

• a worsening of symptoms, more than would be accounted for by normal day-to-day variation, that affects the person's ability to perform their usual activities. flare-ups may occur spontaneously or be triggered by another illness, overexertion or other triggers. flare-ups usually occur as part of post-exertional malaise but it is possible for other symptoms, such as pain, to flare-up without post-exertional malaise. The worsening of symptoms is transient and flare-ups typically resolve after a few days, either spontaneously or in response to temporary changes in energy management or a change in treatment. A relapse lasts longer than a flare-up

Graded exercise therapy

• is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active

Physical activity

• any bodily movement produced by skeletal muscles that results in energy expenditure. It should not be confused with exercise. Physical activity in daily life can be categorised into occupational, sports, conditioning, household or other activities, and can be done during leisure time, to get around or as part of a person's work. See World Health Organization advice on physical activity. Physical activity has a health benefit for most people and many conditions, but in people with ME/CFS, physical activity may make their symptoms worsen

Relapse

• a sustained and marked exacerbation of symptoms lasting longer than a flare-up and needing a substantial and sustained adjustment to the person's energy management. It may not be clear in the early stages of a symptom exacerbation whether it is a flare-up or a relapse. Relapses can lead to a long-term reduction in the person's energy limits

Reference:

• NICE (October 2021). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management