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.
Thanks for this, Oonagh. You have shown very clearly a major issue for people with LC and ME: rest and recovery, and recognition, or lack thereof, of its importance. Thanks so much for sharing your story. I'll be sharing this with others, just as I saw it through a friends sharing via a LC support group.
"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.
Excellent article 👏 Thanks for sharing. The cultural and social expectations on patients are powerful. Society needs to change, understand and support. Highlighting this process is important for patients and those around them.
This is an extremely valuable article and one that all primary care (and other) physicians should take to heart. It emphasises that the cavalier prescription of exercise can have dire consequences for the physical, emotional, cognitive, social and occupational outlook of this patient group.
There is another, potentially very negative consequence - the patient may conclude that any further consultations are pointless and abstain from doing so in the future.
This is so beautifully written, so wise & deeply moving. Even after 39 years with severe ME this piece shed important new light on a familiar & much discussed topic.
Yet again, a powerful, enlightening and accessible explanation of issues surrounding LC and ME. Thanks, once more, for all you do to highlight the complexity of the challenges and the need for change.
Good article. I'd like a follow up article about how to do aggressive rest. People write execerise programmes. What does a rest programme look like? I'd welcome guidance. Or direction to another piece on the site. LC for 3 years.
Hi Oonagh. Great article. I’m almost 3 years into LC, also dealing with POTS and ME as a result. I wasn’t a professional athlete but was a long distance junkie — walking, hiking, swimming, cycling. I’ve come to realize that rest isn’t just a physical act. There’s a psychology to rest, and one I haven’t yet mastered (to my own detriment — many crashes and a lowering of my baseline). In our healthy lives, it seemed like “rest” guaranteed rejuvenation and renewed energy — a normalcy that was comfortable, fulfilling, vital. But the rest related to chronic diseases seems intertwined with a reality — both physical and psychological — that we likely won’t return to our former identities and abilities. It’s a rest that means learning to develop and embrace a new identity — with no guarantee that the new identity won’t mysteriously morph into something different as the diseases evolve. I’m finally at a point where I’m letting go of my former self (and the hope that I could again become that person). I find it interesting that you made a similar change at the 3-year point in your journey (so perhaps I’m right on schedule)! Will see how things evolve as I move forward. Thanks again for your wonderful article and your inspirational story!
It's exactly this dichotomy I never understood and really struggle with. I was a recreational athlete and every training plan I ever followed emphasised the importance of rest and told you to cut back and rest *more* if you felt overly fatigued.
Yet in GET, patients are expected to push through, follow the plan to the letter, and ignore their symptoms? They are expected to train bodies that cannot be trained (as shown by e.g. Wüst et al) and are in a constant state of overexertion all the time.
If a healthy person went to the doctor and told them "I run a 5k at max pace and a half-marathon every day and I feel dreadful all the time. What is wrong with me?", no doctor in their right mind would recommend *more* exercise. Yet that is what happens with us. Except we experience this sort of physiological stress often by simply existing.
*The example with the 5k is based on my HR and (presumed) anaerobic threshold now compared with my values and activities from before I got ME.
Maybe it's just a coincidence, but at Year 2, after two years of being almost completely housebound and totally unable to do anything physical, I also experienced what seemed like some sort of recovery and was able to train, before everything collapsed again. I don't know why things got so much better at that point, but I never experienced it again in the 24 years since.
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.
The Forest App looks really cool. I guess if I know my plant would wither considering my current habits, I probably need the App even more 😬.
Thanks for this, Oonagh. You have shown very clearly a major issue for people with LC and ME: rest and recovery, and recognition, or lack thereof, of its importance. Thanks so much for sharing your story. I'll be sharing this with others, just as I saw it through a friends sharing via a LC support group.
All the best for your continuing recovery.
I’ve left most socials to help with my pacing, but I might pop back into insta to check this out
"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.
Excellent article 👏 Thanks for sharing. The cultural and social expectations on patients are powerful. Society needs to change, understand and support. Highlighting this process is important for patients and those around them.
This is an extremely valuable article and one that all primary care (and other) physicians should take to heart. It emphasises that the cavalier prescription of exercise can have dire consequences for the physical, emotional, cognitive, social and occupational outlook of this patient group.
There is another, potentially very negative consequence - the patient may conclude that any further consultations are pointless and abstain from doing so in the future.
This is so beautifully written, so wise & deeply moving. Even after 39 years with severe ME this piece shed important new light on a familiar & much discussed topic.
Thank you so much Oonagh.
Beautifully written, Oonagh. Thank you for your advocacy,
Thanks Oonagh - this message is so important & so little understood. 🙏💙🫂
Thank you so much for sharing your story and for fighting for us all.
People seeing this disease even affect Olympic athletes helps silence critics who accuse sufferers of just being lazy/unfit.
Yet again, a powerful, enlightening and accessible explanation of issues surrounding LC and ME. Thanks, once more, for all you do to highlight the complexity of the challenges and the need for change.
Oonagh Cousins - #SpeaksForMe
Thank you for sharing your experience.
Good article. I'd like a follow up article about how to do aggressive rest. People write execerise programmes. What does a rest programme look like? I'd welcome guidance. Or direction to another piece on the site. LC for 3 years.
This! "People with Long Covid and ME don’t need sympathy – they need a cultural shift."
ME = Myalgic Encephalomyelitis
Hi Oonagh. Great article. I’m almost 3 years into LC, also dealing with POTS and ME as a result. I wasn’t a professional athlete but was a long distance junkie — walking, hiking, swimming, cycling. I’ve come to realize that rest isn’t just a physical act. There’s a psychology to rest, and one I haven’t yet mastered (to my own detriment — many crashes and a lowering of my baseline). In our healthy lives, it seemed like “rest” guaranteed rejuvenation and renewed energy — a normalcy that was comfortable, fulfilling, vital. But the rest related to chronic diseases seems intertwined with a reality — both physical and psychological — that we likely won’t return to our former identities and abilities. It’s a rest that means learning to develop and embrace a new identity — with no guarantee that the new identity won’t mysteriously morph into something different as the diseases evolve. I’m finally at a point where I’m letting go of my former self (and the hope that I could again become that person). I find it interesting that you made a similar change at the 3-year point in your journey (so perhaps I’m right on schedule)! Will see how things evolve as I move forward. Thanks again for your wonderful article and your inspirational story!
This is amazing, thank you!
It's exactly this dichotomy I never understood and really struggle with. I was a recreational athlete and every training plan I ever followed emphasised the importance of rest and told you to cut back and rest *more* if you felt overly fatigued.
Yet in GET, patients are expected to push through, follow the plan to the letter, and ignore their symptoms? They are expected to train bodies that cannot be trained (as shown by e.g. Wüst et al) and are in a constant state of overexertion all the time.
If a healthy person went to the doctor and told them "I run a 5k at max pace and a half-marathon every day and I feel dreadful all the time. What is wrong with me?", no doctor in their right mind would recommend *more* exercise. Yet that is what happens with us. Except we experience this sort of physiological stress often by simply existing.
*The example with the 5k is based on my HR and (presumed) anaerobic threshold now compared with my values and activities from before I got ME.
Maybe it's just a coincidence, but at Year 2, after two years of being almost completely housebound and totally unable to do anything physical, I also experienced what seemed like some sort of recovery and was able to train, before everything collapsed again. I don't know why things got so much better at that point, but I never experienced it again in the 24 years since.