ME/CFS Skeptic
Senior Member (Voting Rights)
I would like to make the following point about pacing.
Like the previous NICE document, this guideline will probably mention pacing, perhaps not as a treatment but as something patients find helpful. I think it’s important to specify what is meant by this. Because pacing in the chronic pain literature means something very different than pacing as it used in the ME/CFS community.
The first definition is more common. When I speak about pacing to friends who work in the healthcare sector, they think they know what I mean but they don’t as they only have the first definition in mind (which is very much a soft form of graded activity). The research group of Deborah Antcliff is now using that definition in ME/CFS literature without making clear the difference with the form of pacing Ellen Goudsmit and Leonard Jason described. According to Antcliff a time-contingent graded increase in activity levels should be an essential element of pacing.
So I hope the NICE document doesn’t simply mention that ME/CFS patients find pacing helpful without specifying what it is, as this might be misinterpreted by many healthcare professionals. They might think ME/CFS patient don’t tolerate full blown GET, but instead prefer a slow and steady form of grading activity.
There is an easy solution to this, because Goudsmit & Jason have worked out a “consensus document” about pacing, specifying what they mean. So I think it’s important to put this on the table when the subject pacing is being discussed. I think some of the descriptions the CDC-website uses are also helpful as they emphasize that pacing is focused on learning to listen to your body and avoiding post-exertional crashes.
Like the previous NICE document, this guideline will probably mention pacing, perhaps not as a treatment but as something patients find helpful. I think it’s important to specify what is meant by this. Because pacing in the chronic pain literature means something very different than pacing as it used in the ME/CFS community.
In the context of chronic pain ‘pacing’ has a history of operant conditioning. Here it is seen as a strategy to achieve a goal, most often a planned and gradual increase of activity levels. It’s about breaking up tasks into manageable parts, doing things slow but steady, having enough rest periods in between, etc.
Pacing as used in ME/CFS draws upon energy conservation principles. It is not aimed at a goal such as increasing activity levels, but at avoiding relapses and post-exertional malaise. While pacing in the chronic pain literature can be time-contingent, a key aspect of pacing in ME/CFS is to listen to symptoms, for example by stopping an activity as soon as muscle cramps arise. It doesn’t rely on plans, targets or goals, but on how patients feel.
Pacing as used in ME/CFS draws upon energy conservation principles. It is not aimed at a goal such as increasing activity levels, but at avoiding relapses and post-exertional malaise. While pacing in the chronic pain literature can be time-contingent, a key aspect of pacing in ME/CFS is to listen to symptoms, for example by stopping an activity as soon as muscle cramps arise. It doesn’t rely on plans, targets or goals, but on how patients feel.
The first definition is more common. When I speak about pacing to friends who work in the healthcare sector, they think they know what I mean but they don’t as they only have the first definition in mind (which is very much a soft form of graded activity). The research group of Deborah Antcliff is now using that definition in ME/CFS literature without making clear the difference with the form of pacing Ellen Goudsmit and Leonard Jason described. According to Antcliff a time-contingent graded increase in activity levels should be an essential element of pacing.
So I hope the NICE document doesn’t simply mention that ME/CFS patients find pacing helpful without specifying what it is, as this might be misinterpreted by many healthcare professionals. They might think ME/CFS patient don’t tolerate full blown GET, but instead prefer a slow and steady form of grading activity.
There is an easy solution to this, because Goudsmit & Jason have worked out a “consensus document” about pacing, specifying what they mean. So I think it’s important to put this on the table when the subject pacing is being discussed. I think some of the descriptions the CDC-website uses are also helpful as they emphasize that pacing is focused on learning to listen to your body and avoiding post-exertional crashes.
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