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bb.scriobh's avatar

So true. I am a former long distance runner (very amateur!) and through that I have experience in how to train a healthy body both through pushing my body the right way and right amount, and through how important rest and recovery is. But I never appreciated how much that part of operating at a high physical level is openly valued in professional sport - so interesting. Very recently a fellow ME person started an online group to support us resting together - @thepacingclub on Instagram - and we’re using Forest app and each other to encourage and support us to rest. One fascinating thing is the ‘rest rankings’ - in our Forest friends group we can see who has rested most each day - who are the sickest and the ones who most need more rest that day - and of course Forest gives a crown for the top rester.. I’m not one for league tables but I love how this turns on its head the normal societal attitude to rest being not a good thing, and instead rewards the ones who’ve rested most. In this club we all know just how hard resting is.

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Richard's avatar

"The work of rest" may sound like a paradox but its true, resting is the right thing to do when you have this kind of condition and a difficult adjustment to make. This approach deserves recognition and needs to be respected by and integrated into received medical wisdom on viral recovery, so that everyone who encounters this misfortune gets the best advice for their own recovery to support their best sustainable levels of activity and quality of life in the future. If I have a life goal after 38 years of viral ME, it is to see this happen so the next generation of patients are not harmed by neglect the way mine was and then we can take the next steps towards finding cures, one by one.

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