...@Sundancer's compelling preference of PENE over PEM ( in case you missed that thread, Sundancers wrote, 'PENE is another way to say PEM, means Post Exertional Neuro-immune Exhaustion. I prefer the term over PEM (Post Exertional Malaise) because it grasps better what happens to the body.'), and now such core experiences/symptoms as crashes are spoken of by us all with different meanings.
I, too, prefer the phrase "Post Exertional Neuro-immune Exhaustion". That, to me, fits much better. The term "malaise" has some of that dismissive quality in it, similar to discounting someone fainting, by saying s/he has "the vapors".
Yeah. Despite all this work here on: fixing symptoms, and I've improved any number of them thru intense diligence and MASSIVE: exertion limitation in all forms.......No lunch with anybody, no walk around the block. No drive out to the countryside. Watch the dust grow. Don't clean the bathroom.
Despite ALL THAT: the brain inflammation is still so intense STILL. It used to periodically lift, but gee whiz LIFT, already.
I miss the occasional lifting of symptoms too. For me, the frequency just kept decreasing, until they stopped altogether. I get days worse than my baseline symptoms, but I no longer expect days (or even hours) feeling better than baseline.
A few years into my ME, I discovered that something in a multivitamin/mineral tablet gave me a temporary remission. After much testing of individual vitamins and minerals, I identified the active ingredient as iodine. Later I discovered that T2 (3-5 diiodothyronine) did the same thing, and I assume that a boost in iodine boosts natural production of T2. After much experimentation, I found that I need an abrupt increase in T2 (or iodine) to have an effect. A small droplet of tincture of iodine or 100 mcg of T2 does the trick. Larger doses don't provide more benefit. If I take it daily, it stops providing a benefit. It doesn't actually reduce my baseline symptoms; it reverses an otherwise increase in those symptoms. One dose works for precisely and consistently 21 days. If I forget to take it, I start feeling worse until I take my dose, and that seems to reset something. My guess is that the increase in T2 increases production of some protein or whatever, or maybe even some organelles (with a 21 day lifespan). The increase in symptoms and the reset are both abrupt, rather than gradual changes, so it's not just a simple depletion of something.
No one else has reported the same benefits from T2 or iodine, but I do wonder how many PWME are missing out on some nutrient or other chemical that would otherwise reduce their overall symptoms. If you ever notice feeling better after eating something (even if it's a day or more later), it's worthwhile to experiment to try to determine what specific component was responsible. As with my example, it may not work if you take it daily. You have to experiment to find out what works for you.
I should point out that while T2 and iodine has a dramatic effect on me, T4 and T3 don't, which leads me to believe that the effect is specific to T2. I suspect that it's due to its effect on messenger RNA production, but it has some other specific functions. The abrupt switch after 21 days is a powerful clue, but I don't know enough biology to know how to apply it.