I'm able to exercise but am still disabled

[Creekside]

Between this and some other details you've mentioned, I'm getting the sense that your ME/CFS seem quite unique compared to both my experience and what I've heard from many other people.

Not totally unique. I've read posts by a few other PWME who were continuing to do bodybuilding at levels way beyond my bike rides. I think outliers like myself are useful for ruling out some theories about ME and PEM. It's not absolute ruling out, since there could be possibilities where a theory is correct, but there are unusual circumstances where an individual has an unusual bypass/correction mechanism, but it still helps decide which theories are more likely to be worth investigating.

No way I could do a 40km bike ride, or any comparable physical activity, without very serious payback, and the real risk of a permanent worsening of my health status.

Yet another variation: even the activities that did trigger PEM never resulted in more than a day or two of feeling lousier. I think food intolerances caused more severe symptoms that PEM did. Microbiome changes (so I assume) caused significant raising of my baseline severity, but could switch off (and on) abruptly. I think that reflects chronic triggering of more severe symptoms, rather than a change in the mechanism that causes the symptoms.

 

[jnmaciuch]

Not totally unique. I've read posts by a few other PWME who were continuing to do bodybuilding at levels way beyond my bike rides. I think outliers like myself are useful for ruling out some theories about ME and PEM. It's not absolute ruling out, since there could be possibilities where a theory is correct, but there are unusual circumstances where an individual has an unusual bypass/correction mechanism, but it still helps decide which theories are more likely to be worth investigating.

Yet another variation: even the activities that did trigger PEM never resulted in more than a day or two of feeling lousier. I think food intolerances caused more severe symptoms that PEM did. Microbiome changes (so I assume) caused significant raising of my baseline severity, but could switch off (and on) abruptly. I think that reflects chronic triggering of more severe symptoms, rather than a change in the mechanism that causes the symptoms.

I think the main concern from a research perspective is: if outlier experiences of a disease without a known biomarker deviate very far from the norm, it may actually be very different disease mechanisms for those outliers, not just that there's an unusual bypass/correction mechanism. Either there are multiple ways to end up with a similar symptom presentation, or the main similarity is something very far downstream.

If it is a case of converging at a far downstream mechanism, that downstream mechanism is obviously important and should be accounted for by a good theory--but a theory should not be discounted because the proposed upstream mechanisms don't match the experience of outliers. Using outliers as a litmus test would really only be useful if we already have a known biological mechanism where all cases must converge.

Also not doubting your experience nor saying you don't have ME/CFS, just cautioning against using more uncommon experiences as a metric for gauging which theories are worth investigating.

 

[Snow Leopard]

This might be controversial but I believe the range of different presenting symptoms across ME/CFS indicates different underlying pathology even if there is also some common pathology as well.

Creekside has provided lots of exercise related ancdotes that are atypical. My experience may be atypical too due to an atypical trigger.

 

[AliceLily]

This might be controversial but I believe the range of different presenting symptoms across ME/CFS indicates different underlying pathology even if there is also some common pathology as well.

Yes, I think I might have come in through something like Reiter's. I don't get the swollen joints though. I tried to explain to a GP when 20 years old that something significant had happened. I was never referred or given any idea what could have happened. I wouldn't have even known what specialist to see about it.

Ten years later I get ME via a bad cold.

 

[Sean]

It would be surprising if ME/CFS did not bring with it some increased risk for getting various other conditions. And vice-versa.

 

[Hutan]

Can anyone think of an experiment that would keep exertion level the same but change the amount of muscle cell damage?

An obvious experiment testing that would be a strong massage, versus lying on the massage bed for the same amount of time. As I've mentioned elsewhere, I reliably got PEM after strong massages, enough times that I realised what was going on and stopped having massages. So, that would be an experiment I would really like to see done.

 

[Mij]

Having my teeth worked on for 2hrs exhausts my jaw. I don't consider that PEM, but I do feel exhausted for the remainder of the day, and that includes my arm and leg muscles.