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:
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:
Work with the person to establish an individual activity pattern within their current energy limits that minimises their symptoms. For example:
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:
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:
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:
Do not offer people with ME/CFS:
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For further details then see full guidance (1).
Definitions:
Care and support plan
Energy limit
Energy management
Exercise
Flare-up
Graded exercise therapy
Physical activity
Relapse
Reference:
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