I don't think oxidative stress is the sole answer.
I agree. How much oxidative stress does a minute or so of chatting with someone cause? I could do a strenuous 40 km bike ride without PEM, but washing one window (uncommon arm usage above shoulders) would trigger full PEM. Oxidative stress, or cytokines, or some other molecules released by such activities? The easy, obvious answers--ones that fit into one or two words--have been checked and failed to be the cause.
I bet PEM is oxygen deprivation...
Again, that doesn't fit a brief chat triggering PEM while other cognitive tasks didn't. Also, that hypothesis means that various techniques for increasing blood flow or oxygenation should be effective treatments for most PWME, yet it fails that test. Also, for me, activities that result in deep breathing and major heart pumping don't seem to affect my ME symptoms.
this is really really depressing. feeling good for a short time, get a sniff of how live could be and then to be thrown back into hell.
That's the wrong perspective. Instead, we should appreciate those times as proving that ME isn't irreversible damage. It proves that we
can feel better (and switch to that state quickly, rather than slow recovery); we just have to find the right chemical or technique to do it reliably, and hopefully permanently. I still believe that it's possible that with the right molecule, we can take one pill and switch back to full non-ME state within an hour. Okay, maybe it will take some supplemental cofactors and avoidance of certain foods to make that special molecule do its job, but those temporary remissions prove that it is possible to switch ME off.
Slightly better days are easier to achieve--and maintain. I've had periods where I've felt significantly worse for weeks or longer, but then figured out what food was responsible, and avoiding that returned me to baseline again. I do think that many PWME are suffering more than necessary because they continue to consume bread or coffee or some other food that they don't realize is worsening their symptoms. These foods change over time, so what was safe at one time may not remain safe, so if you start feeling worse, it may be time to retest the foods you believe are safe for you.
Does anyone have ideas for better ways of handling those days when we do feel a bit better? Instead of overdoing something, maybe accept that it's a temporary "good day" and have a little celebration for yourself? Keep some guilty pleasures on hand for that special occasion? Have some non-PEM-triggering activities planned for, the kind that you can't enjoy properly when suffering your baseline symptoms?