Energy management

Also see the section on care for people with severe or very severe ME/CFS.

1.11.2 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.

1.11.3 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.

1.11.4 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.

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

1.11.6 Advise people with ME/CFS how to manage flare-ups and relapses (see the section on managing flare-ups in symptoms and relapse).

1.11.7 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.

1.11.8 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 (also see the sections on physical functioning and mobility and care for people with severe or very severe ME/CFS) or
• feel ready to progress their physical activity beyond their current activities of daily living (see the section on physical activity and exercise) or
• would like to incorporate a physical activity or exercise programme into managing their ME/CFS (see the section on incorporating physical activity and exercise).