Pacing

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:

  1. “Symptom contingent pacing”; activities are driven by perceived symptom levels, with the aim of avoiding symptoms and conserving energy
     

  2. “Quota-contingent pacing”; undertaking activities according to an amount/distance/goal with the aim of improving function
     

Most physios are probably more aware of quota-contingent pacing for the management of pain and fatigue (such as cancer related fatigue). They may try to apply this to people with ME too.

However, we believe that symptom contingent pacing is most appropriate for people with ME, due to the post exertional malaise (PEM) that is a hallmark symptom of this disease. PEM is the marked symptom exacerbation when people with ME exceed a certain activity level which can persist for days, weeks and even months after exertion. If a person tries to push themselves beyond their energy levels, they will only succeed in triggering PEM and making 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.

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.

Some people find it useful to keep a record of activities to help them with pacing, especially with the delayed onset of PEM that can be experienced.

For more detail regarding pacing in ME/CFS see here.

 

“Activities, both physical and mental, should be carried out in small manageable chunks with a period of rest or relaxation in between. It is important to stop any form of activity before an exacerbation of fatigue or other symptoms occur.” 

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We want to link with physiotherapists or people with ME.

Whether you need advice, resources or just to share your story. 

Contact us at physiotherapyforme@gmail.com 

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