We consistently hear from people with ME that pacing is one of the most useful strategies for managing their condition. There appears to be no clear definition of pacing or standardised guidelines which makes it challenging to describe, so we have tried to pull together some of the main points.
There are two main types of pacing:
“Symptom contingent pacing”; activities are driven by perceived symptom levels, with the aim of avoiding symptoms and conserving energy
“Quota-contingent pacing”; undertaking activities according to an amount/distance/goal with the aim of gradually increasing activity and improving function
Physios can show a preference towards quota-contingent pacing, which is used successfully for the management of pain and fatigue (such as cancer related fatigue), and for people who appear to be "deconditioned" and need gradual increases in their activities. However, this is not the right approach to pacing for people with ME.
Pacing for people with ME is difficult due to the nature of post exertional malaise (PEM), which is a hallmark symptom of this disease. PEM is the marked symptom exacerbation when people with ME exceed a certain activity level, and can persist for days, weeks or even months after exertion. Unfortunately PEM is usually a delayed reaction, often 24-48 hours after the triggering event, so it can be very difficult to determine what level of activity is "safe". If a person tries to push themselves beyond their energy levels, they will trigger PEM and make their symptoms worse.
The ME Association provides this description of pacing:
The ME Association have a leaflet on energy management here
By carrying out activities in small chunks, people with ME can hopefully avoid over-exertion, and therefore avoid triggering PEM. Some people find it useful to keep a record of activities to help them with pacing, bearing in mind the onset of PEM is delayed.
Some people also use a Heart Rate monitor to help them with pacing.
It’s imperative to recognise that the amount of activity people with ME will be able to manage will depend on their symptoms and severity. Some may only be able to manage very small amounts of activity a day; every person is different.
It’s also essential to note that “activity” includes mental activity (eg reading a book, watching tv, talking on the phone) and emotional activity (eg being upset, happy or angry) as well as physical activity.
If you are considering a change in the way you manage your activity, we would recommend doing this with guidance from a health care professional who understands ME.
For more detail regarding pacing in ME/CFS see here. We hope to explore this topic further in time.