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Management

Last reviewed dd mmm yyyy. Last edited dd mmm yyyy

Authoring team

Managing ME (myalgic encephalitis)/CFS (chronic fatigue syndrome)

Be aware that ME/CFS symptoms can be managed but there is currently no cure (non-pharmacological or pharmacological) for ME/CFS

Energy management

Discuss with people with ME/CFS the principles of energy management, the potential benefits and risks and what they should expect. Explain that it:

  • is not curative
  • is a self-management strategy led by the person themselves with support from a healthcare professional in an ME/CFS specialist team
  • includes all types of activity (cognitive, physical, emotional and social) and takes into account overall level of activity
  • helps people learn to use the amount of energy they have while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits
  • recognises that each person has a different and fluctuating energy limit and they are experts in judging their own limits
  • can include help from a healthcare professional to recognise when they are approaching their limit children and young people in particular may find it harder to judge their limits and can overreach them)
  • uses a flexible, tailored approach so that activity is never automatically increased but is maintained or adjusted (upwards after a period of stability or downwards when symptoms are worse)
  • is a long-term approach - it can take weeks, months or sometimes even years to reach stabilisation or to increase tolerance or activity

Help people with ME/CFS develop a plan for energy management as part of their care and support plan. Support them to establish realistic expectations and develop goals that are meaningful to them. Discuss and record the following in the plan along with anything else that is important to the person:

  • cognitive activity
  • mobility and other physical activity
  • ability to undertake activities of daily living
  • psychological, emotional and social demands, including family and sexual relationships
  • rest and relaxation (both quality and duration)
  • sleep quality and duration
  • effect of environmental factors, including sensory stimulation

Work with the person to establish an individual activity pattern within their current energy limits that minimises their symptoms. For example:

  • agree a sustainable level of activity as the first step, which may mean reducing activity
  • plan periods of rest and activity, and incorporate the need for pre-emptive rest
  • alternate and vary between different types of activity and break activities into small chunks.

Agree how often to review the person's energy management plan with them and revise it if needed.

Advise people with ME/CFS how to manage flare-ups and relapses

Make self-monitoring of activity as easy as possible by taking advantage of any tools the person already uses, such as an activity tracker, phone heart-rate monitor or diary.

 

Refer people with ME/CFS to a physiotherapist or occupational therapist working in an ME/CFS specialist team if they:

  • have difficulties caused by reduced physical activity or mobility or
  • feel ready to progress their physical activity beyond their current activities of daily living or
  • would like to incorporate a physical activity or exercise programme into managing their ME/CFS

Incorporating physical activity and exercise

Do not advise people with ME/CFS to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms

Only consider a personalised physical activity or exercise programme for people with ME/CFS who:

  • feel ready to progress their physical activity beyond their current activities of daily living or
  • would like to incorporate physical activity or exercise into managing their ME/CFS.

Tell people about the risks and benefits of physical activity and exercise programmes. Explain that some people with ME/CFS have found that they can make their symptoms worse, for some people it makes no difference and others find them helpful.

If a physical activity or exercise programme is offered, it should be overseen by a physiotherapist in an ME/CFS specialist team.

* If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree a programme with them that involves the following and review it regularly:

  • establishing their physical activity baseline at a level that does not worsen their symptoms
  • initially reducing physical activity to be below their baseline level
  • maintaining this successfully for a period of time before attempting to increase it
  • making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits
  • recognising a flare-up or relapse early and outlining how to manage it

Do not offer people with ME/CFS:

  • any therapy based on physical activity or exercise as a cure for ME/CFS
  • generalised physical activity or exercise programmes - this includes programmes developed for healthy people or people with other illnesses
  • any programme that does not follow the approach as * above or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy
  • physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.

For further details then see full guidance (1).

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 limit

  • the amount of energy a person has to do all activities without triggering an increase or worsening of their symptoms

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:

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