Trial Report [Abstract] - Individualised aerobic and resistance exercise training improves exercise tolerance in individuals with [LC]: [PERCEIVE], 2025, Howden+

Mij said:
It can progress in the later stages of illness though.
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I don’t think Long COVID is one illness. Just an umbrella term for various sequelae of COVID from Lung Damage to OI.

If you’re saying post-viral syndrome without PEM can “progress” to with PEM -> ME/CFS yeah I totally agree. Many people have repeated that anecdotally, including you IIRC.
 
forestglip said:
If a healthy person and a person with ME/CFS do identical amounts of exercise, I think their objective markers of physical fitness like muscle mass and VO2 will likely still improve similar amounts.
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I can anecdotally testify to this. I did a few pushups and dips a few times a week about 15 years ago. People actually noticed the change in my physique a year later. Only problem was that my QOL went to hell through that time. I decided that the improved physique wasn't worth the suffering and went back to skin and bones.

It may be true that regular exercise can leave you physically worse off at the end. But the exercise itself is not directly responsible for the deterioration. The worsening hypersensitivity to exertion is.
 
poetinsf said:
But the exercise itself is not directly responsible for the deterioration. The worsening hypersensitivity to exertion is.
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What caused the worsening of the hypersensitivity? I’d say it’s fair to argue that it might be the exercise, at least indirectly through affecting something that affects the underlying disease mechanism (so not by permanently damaging muscles etc).
 
When I started exercising again several years after onset PVFS is when I started experiencing cognitive PEM from exercise. I never had cognitive issues before that.

I don't believe exercise permanently damages muscles because I don't think I would recover from delayed PEM after 3-4 days and go back to baseline again for the last 25+ years.
 
Utsikt said:
What caused the worsening of the hypersensitivity? I’d say it’s fair to argue that it might be the exercise, at least indirectly through affecting something that affects the underlying disease mechanism (so not by permanently damaging muscles etc).
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I think I might not have made my point clearly before.

Yes, I think exercise can probably cause PEM. It might be any of a million mechanisms for how it happens. Maybe chemicals released by the muscles float to the brain and damage neurons. Maybe muscles aren't involved and it's all in the brain.

My point is that there's no reason to require that muscles in people with ME/CFS don't get stronger with training for causality to exist.

Otherwise, what is the implication? Exercise makes muscles and cardiorespiratory function worse instead of better, and this is what causes symptoms? So deconditioning causes symptoms? People deconditioned just from being sedentary don't normally get ME/CFS, so this just adds complexity without really explaining anything.
 
Utsikt said:
What caused the worsening of the hypersensitivity? I’d say it’s fair to argue that it might be the exercise, at least indirectly through affecting something that affects the underlying disease mechanism (so not by permanently damaging muscles etc).
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Sure it's possible, but I do wander whether there is that much reason as we've seen to specifically argue for that because one already has postulated an underlying disease mechanism which undoubtedly will be complex so can swing in any direction by whatever is going on.
 
forestglip said:
I think I might not have made my point clearly before.

Yes, I think exercise can probably cause PEM. It might be any of a million mechanisms for how it happens. Maybe chemicals released by the muscles float to the brain and damage neurons. Maybe muscles aren't involved and it's all in the brain.

My point is that there's no reason to require that muscles in people with ME/CFS don't get stronger with training for causality to exist.

Otherwise, what is the implication? Exercise makes muscles and cardiorespiratory function worse instead of better, and this is what causes symptoms? So deconditioning causes symptoms? People deconditioned just from being sedentary don't normally get ME/CFS, so this just adds complexity without really explaining anything.
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I understood you, but I’m not sure others did.

Although I don’t think it can be assumed that pwME/CFS muscular response is similar to equally active but otherwise healthy people, in the same way that people with the flu’s muscles might respond differently.

What that actually entails is impossible for me to say.
 
EndME said:
Sure it's possible, but I do wander whether there is that much reason as we've seen to specifically argue for that because one already has postulated an underlying disease mechanism which undoubtedly will be complex so can swing in any direction by whatever is going on.
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If Exercise > … > PEM > … > Worse baseline long term, then the exercise is causally involved in the worsening, even if it went through other steps to get there.
 
Utsikt said:
If Exercise > … > PEM > … > Worse baseline long term, then the exercise is causally involved in the worsening, even if it went through other steps to get there.
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Of course, but that requires the 2 steps we know very little of and we already know that exercise is not a necessary condition for either.
 
Utsikt said:
What caused the worsening of the hypersensitivity? I’d say it’s fair to argue that it might be the exercise, at least indirectly through affecting something that affects the underlying disease mechanism (so not by permanently damaging muscles etc).
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If you allow me to speculate, I'd say it is directly responsible for worsening the hypersensitivity. Whatever is primed to respond to exercise (or the product of the exercise like low grade inflammation) could be getting even more aggravated by exercise. Mine always returned back to the baseline even if it takes weeks or months, but there are anecdotal reports that the worsening can be permanent. But that is different from saying that exercise is directly responsible for the muscular/cardiovascular deterioration.
 
EndME said:
Of course, but that requires the 2 steps we know very little of and we already know that exercise is not a necessary condition for either.
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Yes, but my point was that exercise is probably one of many factors that can lead to deterioration, so we can’t say that the physical response to exercise is equal in pwME/CFS and HC, because those physical parameters might be negatively affected by the deterioration of the disease as a whole.
 
poetinsf said:
If you allow me to speculate, I'd say it is directly responsible for worsening the hypersensitivity. Whatever is primed to respond to exercise (or the product of the exercise like low grade inflammation) could be getting even more aggravated by exercise. Mine always returned back to the baseline even if it takes weeks or months, but there are anecdotal reports that the worsening can be permanent. But that is different from saying that exercise is directly responsible for the muscular/cardiovascular deterioration.
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Yes, but in the speculation it would still be causally linked to the muscular/cardiovascular deterioration, but indirectly through other mechanism.

I think we agree here.
 
Utsikt said:
Yes, but my point was that exercise is probably one of many factors that can lead to deterioration, so we can’t say that the physical response to exercise is equal in pwME/CFS and HC, because those physical parameters might be negatively affected by the deterioration of the disease as a whole.
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Naturally and it's one of the reasons why we should argue for some smart long-term studies tracking patients to understand which phenomena exist.
 
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