Pacing and Management Guide for Pediatric ME/CFS and Long Covid: #MEAction, Aug 2022

https://www.meaction.net/wp-content/uploads/2022/08/Pediatric-Guide-to-Pacing-2.pdf

 

2 big things missing, even though I know this focuses on pacing are:
- the different severities. One thing I found was that when I became severe people were 'prepared to allow me' consideration around the mild level of adjustments, which was useless. And I suspect down to the general world attitude from many of 'everything is to be negotiated vs the needs of other people', and missing the point entirely.

- the crashes and what they will consist of, and how people might need to manage them/grace given. They cannot be avoided for most severities, though it can be underlined every effort from those around them should be made to try and do so because of the risk. But also how important that if one occurs they can rest as needed and how dangerous this point is in ensuring people don't end up with permanent deterioration by treating it as if you just 'pace out of it'. e.g. if total rest needed to allow that for however long (and reassure it will ease off when it eases off), sleep reversal there won't be 'one way' that works for all where it is PEM induced and trying to 'hygeine' out of it when it is a crash is a bad idea.

Some of this isn't bad advice, but I do hate when pacing comes across as if the condition and its solution is 'behavioural' by missing out these realities - it's a 'manage it somewhat' technique, not a stick to beat people who have a serious condition with when they get a crash and 'can't perform as expected'

 

You put that brilliantly @bobbler.

 

Announcement on the ME Action website, posted on August 2nd:

https://www.meaction.net/2022/08/02/just-in-time-for-school-pediatric-pacing-guide/