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Yeah so the only time I have noticed an improvement is when I get out of rolling PEM and paced better. But that kind of makes sense. I guess I'm trying to figure out if one's PEM threshold is purely absolute (a function of one's severity) or whether there's also a relative component (based on...

Very interesting! Some (pretty random) thoughts: Would another way to look at it be that the PEM process doesn't fully resolve sometimes? If people report experiencing PEM for weeks to months maybe it could be prolonged PEM which people experience as a lower baseline? Could deconditioning also...

Based on my reading on somatic symptom disorder it's about the thoughts, feelings and behaviors related to the symptoms being excessive. Which mostly becomes a problem for illnesses doctors have a poor understanding of and thus don't know what constitutes a "normal" psychological reaction. And...

That is fair. Permanent is a tricky word but there are people that have only gotten worsen over 5, 10, 20 years. I don't think that means that they can never improve. But there's a stark difference between people that are worse for a few months and then improve again.

So in my experience I've had a few times where I overexerted way too much which always results in 1-2 weeks of severe PEM and after that I just feel worse and can do less and never get back to my old baseline. Maybe you can argue that I never got out of PEM in the first place.. I don't know...

Sure but that seems to be true for most things on ME/CFS right? The specific issue here though seems to be that current patient information generally does not include any information about permanent detoriation after overexertion / PEM. Even though that experience doesn't seem uncommon at all...

My point was more so that it does not seem uncommon for patients to experience permanent detoriation following overexertion/PEM. Whether's it's causative we don't know but I've heard many patients attribute it to overexertion. If that's the case then I don't see why it should not be included in...

So I've always understood that overexertion can lead to permanent detoriation in every ME/CFS patient. People often return to their baseline after PEM but that's not guaranteed. Plenty of people have become severe because they kept overdoing it when they were mild. Is that not generally...

Thanks for sharing. Me and my parents have been trying to look into this as well, together with the municipality.

I would try questioning whether this is really true. I don't agree that it is, but it might also depend on your definition of work. Do you need high education to do something useful for society? Again, I would argue no. Sounds to me like you have a lot of ambition and high expectations of...

Wish I could help, seems like a fun and useful project. I'm a software engineer but not much of one at my current severity. :emoji_sweat_smile:

The wonders of AI..

I don't mean to say they're abnormally high like we see in Cushing Syndrome but they could still be elevated temporarily (within normal ranges). Thus leading to immunosupression. Or maybe it blocks/mask symptoms through a neural pathway. But to me it does seem the stress system is involved in...

I will add that this is the same for me. To the point that excessive resting and lack of novelty/stimulation actually makes me worse in the long run. It's a delicate balance. On dopamine it's also interesting to note that dopamine is a precursor to adrenaline so there is a relationship there...

I asked the same thing in that thread: This is what @Jonathan Edwards noted: Anyways I also really hope we can look at this one way or another!

I think most importantly a theory should be able to explain PEM one way or another. I don't really see how it does that? Another thing that turns me off from this theory is that it's supposed to explain a whole host of very different diseases. People have been trying to blame stress for ME/CFS...

I was more so thinking about non-muscle microtrauma.

Maybe thinking too much outside of the box but would there any non-exertion things that should also trigger PEM if that's the case? It would be interesting if we could reliably trigger PEM without (over)exertion.

I don't think so but I do think cortisol is heavily involved in stress and energy production and thus could relate to (over)exertion.

Yeah I guess the measurements don't even need to be abnormal for there do be cascading effects due to ME/CFS. I just always think it fits well with the insomnia many people experience at PEM onset / during PEM.