UK ME Association documents on pacing

Discussion in 'Monitoring and pacing' started by Sly Saint, Apr 19, 2023.

  1. Ravn

    Ravn Senior Member (Voting Rights)

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    This updated guideline looks overall ok to me. Not perfect for sure, but plenty good enough to be useful (keeping in mind the aphorism 'perfect is the enemy of good'). There are plenty of highlighted warnings to stay clear of GET, plus repeated advice to listen to your own body and to always be guided by your own symptoms and energy envelope.

    Yes, there is some ambiguous phrasing, especially around the increasing of activity and avoidance of total bed rest. But read in context of the repeated mentions of the need to work within each individual's current limits I don't think it's a major concern. Possibly the most dangerous statement in the whole thing is to ask your GP for advice or referral for help with pacing. This strikes me, at least for now, as a form of Russian roulette

    Having written pacing guidance myself I strongly suspect the ambiguities in this document arise from the devilish difficulty of trying to account for the different severity levels as well as for people on different illness trajectories. Pacing advice suitable for a mild or moderate person can be totally unsuitable for a severe or very severe person, and vice versa. Equally, pacing advice for people who are lucky enough to be (somewhat) recovering must necessarily be different to pacing advice for people who are deteriorating.

    They clearly tried to account for this by reiterating multiple times that pacing has to be matched and adjusted to a person's current state. Maybe the only way to make things even clearer is to create different pacing guidance for different target audiences (i.e. severity levels, illness trajectories)

    Edited: fixed autocorrect errors
     
    Last edited: May 31, 2023

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