I apologize to
@krzysiek.s and others for the very, very long delay in replying to this.
To give a brief update, I have spent the last three years gradually improving, with a very mixed year in 2017, a much better 2018 and having spent most of 2019 at what I would more or less consider my "baseline" functionality prior to this episode (quite good relative to other ME/CFS patients).
The key has been sleep. Not just a certain number of hours, but deep, restful sleep. The first hints that this was the primary driver came when, as I mentioned a few posts up, I enjoyed a "mini-remission" after moving to a new country and spending a few weeks searching frantically for a place to live and attending classes at the same time. I was so tired every night that I basically passed out, much earlier than I'd normally sleep. Once things settled down, the symptoms returned. Ditto a few months later when the partner and I took a trip to Cambodia - the first time in a year I went almost entirely without symptoms for almost a week. A few days after coming home and settling back in, symptoms came back. And so on and so forth.
I have spent the last year or so working full-time. It has been generally exhausting and taken an emotional toll, but I sleep deeply most nights and thus, I have been almost entirely free of the symptoms I described in this thread (particularly the constant sweating, shakiness of limbs, stiff back, et cetera). They only return when I have long bouts of insomnia, or, as has been the case recently (when I have been working from home), return to my old sleep schedule.
Whatever damage I did to myself in 2016 was likely a simple product of pushing too hard and deepening the existing damage to my body's immune and/or neurological system. I actually don't think the methyl supps had all that much to do with it, other than giving me a temporary burst of energy that likely helped me convince myself to keep pushing too hard. If my body were a rubber band, I stretched it too far and something snapped. This probably would have happened with or without methyl supps, they just gave me a nudge in that direction, I think. I have been off them for nearly two years, and have gradually shifted towards viewing at least this particular issue as related to a dysfunction in my HPA axis - an idea that's gained more traction in recent years as more research has been done. And deep sleep seems to go a long way towards fixing it naturally and at least returning me to a steady baseline of function.
There is some lingering concern over this. I still miss the days when, prior to this episode, I could go to bed at just about any hour and not deal with these particular symptoms. And since one of my career goals is to shift to full-time remote work for various reasons, I do worry about what effect that will have on my sleep quality. But having a reliable tool in my arsenal to mitigate these issues is a tremendous relief.
So this story is by no means over, but I wanted, for the sake of others who might stumble across this, to provide a positive update in the hopes that it might be useful to them, or at least somewhat encouraging.