myalgic encephalitis (ME) / chronic fatigue syndrome (CFS) - flare-ups and relapse

Last edited 11/2021 and last reviewed 11/2021

Managing flare-ups in symptoms and relapse in myalgic encephalitis (ME)/chronic fatigue syndrome (CFS)

Explain that flare-ups and relapses can happen in ME/CFS even if the person's symptoms are well managed.

Tell people with ME/CFS that:

• they are likely to be having a flare-up if they experience a worsening of their symptoms beyond their normal day-to-day variation, which lasts a few days

• a relapse is when there is a sustained and marked exacerbation of ME/CFS symptoms lasting longer than a flare-up and needing substantial and sustained adjustment of energy management.

Include guidance on managing flare-ups and relapses in the person's care and support plan.

Evaluate and investigate any new symptoms or a change in symptoms and do not assume they are caused by the person's ME/CFS.

Discuss and agree self-management strategies with the person with ME/CFS to help them respond promptly if they have a flare-up or relapse, and record these in their care and support plan. This should include:

For a flare-up:

• identifying possible triggers, such as acute illness or overexertion (in some cases, there may be no clear trigger)

• temporarily reducing their activity levels

• monitoring symptoms, recognising that although flare-ups are transient, some will develop into a relapse

• not returning to usual activity levels until the flare-up has resolved.

For a relapse:

• reducing, or even stopping, some activities

• increasing the frequency or duration of rest periods

• reassessing energy limits to stabilise symptoms.

If a flare-up or relapse cannot be managed using the person's self-management strategies outlined in their care and support plan or they are worried about new symptoms or a change in symptoms, advise the person to contact their named contact in primary care or the ME/CFS specialist team

When a person with ME/CFS has a relapse, review their care and support plan with them (if needed), and discuss and agree a course of action, taking into account:

• possible causes of the relapse, if known

• the nature of the symptoms

• the severity and duration of the relapse (bearing in mind this can be years).

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