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Activity Management

The main management approach for ME/CFS is reducing your activity to a level that can be sustained and that avoids triggering Post-Exertional Malaise (PEM). 

 

Post-exertional Malaise (PEM) is a core symptom of ME/CFS and it is an abnormal response to normal activity. It is a disproportionate and prolonged increase in symptoms. PEM makes us sicker and makes it harder to function and participate in our daily life. 


PEM can be triggered by various kinds of activity - physical, mental, emotional, orthostatic (moving to an upright position), sensory overload, multi-tasking, and physiological processes (temperature regulation, digestion). PEM often occurs hours or days after the triggering activity. ​

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Activity management is key to minimising PEM and to stabilising symptom severity. Adopt the ‘Stop, Rest, Pace.’ approach and practice pacing as your commitments allow. 

 

We provide more detailed information below. 

Pacing

Pacing helps us avoid triggering PEM. Pacing means adjusting your life to stay within your 'Energy Envelope' as much as possible. 

 

Pacing involves:

  • Prioritising what to spend energy on - and choosing which activities to reduce or drop altogether (this may include making life-changing decisions such as reducing employment, retiring, or dropping out of education).

  • Changing the way chosen activities are done so they require less energy (this may include use of mobility aids).

  • Breaking activities down into short bursts.

  • Interspersing activity with rest (physical, cognitive & sensory rest - including rest from screens).

  • Aiming for a balance of necessary activities and pleasurable activities.

  • Creating (usually) safe and energy-efficient routines for regular necessary tasks (this helps reduce cognitive load).

  • Stopping before symptoms increase and taking pre-emptive rest (some patients experience subtle cues when getting close to exceeding their Energy Envelope but many don't so they need to be proactive).

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Pacing sounds simple but it is not easy to put into practice, and it is individual to you. Be kind to yourself as you cope with daily demands and as you learn about your energy envelope. 

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When exploring what you can manage, it can be useful to keep an 'activity and symptom diary' for a few weeks to see if you can identify any patterns, early warning signs and triggers which could help to reduce PEM episodes. You might find our diary template useful to do this.

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Wearable Biometric Devices:

Some people find using a wearable activity tracker helpful for completing their activity diary, and for keeping steps or heart rate under a certain level.

 

Although a tracker does not measure cognitive or emotional activity, it can help you recognise activities and tasks where your heart is elevated (meaning you are using more energy or under more stress).

 

A good basic activity tracker is the Xiaomi Smart Band​ and we have some of these available for loan.

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The Polar H10 HR strap is recommended if you wish to monitor Heart Rate Variability. 

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Further reading:

To find out more about pacing, we recommend these resources from Emerge Australia:

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ME Support - NZ also has an eight-page Basics of Pacing handout in their Long Covid Support Tool.

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We also recommend these resources from M.E. Awareness NZ:

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Articles about Heart Rate Variability:

Practical Supports

Visit our Practical Supports section for some other ideas for finding easier ways to do things, so that you can more often live within your energy envelope. Suggestions include using mobility aids and energy saving approaches. 

Safely exploring exercise

​When you live with a broken energy system, you need to approach exercise as ‘movement’ for your health and wellbeing, rather than ‘exercise’ to improve fitness.

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​We have a few presentations on this topic that you may wish to watch:

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​The following organisations provide guidance for safe exercise: 

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