Further most people with immune illness (CFIDS) find they are chemically sensitive and/or suddenly have developed new and more serious allergies. One dose of Bactrim (sulfa) and I was miserable for 24 hours. It burned my stomach basically.
Many viruses can lie dormant or years and then reactivate, perhaps at a stressful time (or in the case of women, during hormonal changes). Some viruses hit and run, leaving the damage behind.
I still wait and pray for the unravelling of this complex disorder and I pray for healing. The human body is so complex, science will never understand it all.
I appreciate the clarity of your thinking on this issue. I was struck by the list of symptoms you and other people gave, as I came down with CFS in my early thirties, nearly twenty years ago, and my own symptoms matched, blow for blow. I was working on a software contract in Worthing, in the South of England and I contracted a severe flu-like illness. Prior to this, I'd been in fairly good shape - I'd always been quite athletic, I walked and cycled everywhere, *swam*, visited the gym a couple of times a week.
I never really recovered from the aforesaid illness. It took me six months to get to a point where I could walk for more than a few minutes or so at a time. I did the laundry by crawling around on the floor, trailing a laundry basket.
My symptoms were:
Problems maintaining body temperature - I'd be freezing on hot, hot summer days and at other times hugely overheated.
Sleep. Like you, I slept like the dead prior to the illness. With it, I would 'sleep' in a weird kind of semi-consciousness. I'd wake in panic several times a night because I'd have stopped breathing. The slightest thing would cause me to wake. Sleep never satisfied.
My eyesight developed floaters. This had never been a factor before - in general, I'd always been in excellent health.
I stopped being able to tolerate milk for several years.
Exercise had an invisible threshold. I could tolerate very minimal amounts as my health very gradually improved, but if I stepped over the intensity threshold, I'd feel as though I'd been poisoned, with a delays of several hours to a couple of days. This was a terrible issue for me as I'm a clinical depressive and I'd used exercise as part of my coping strategies. I grew fat, and sickly looking. At my worst I looked pretty hideous. My partner eventually dumped me for a much younger woman.
Cognitively, I was damaged. I had problems with word order when speaking. I could no longer multi-task, particularly when engaging in conversation. If someone interrupted me, I'd lose track of what I'd been saying.
I'd have fade-outs, wherein I'd be more or less functional and then I'd hit a wave of fatigue and have to stop whatever I was trying to do and try to rest instead. It was hard, for years, to undertake long car journeys for this reason.
It was particularly hard as my friends thought for a long while that I was faking it. The only doctor I've ever met who believed it to be a genuine, physical problem was himself a sufferer. I don't know whether the situation's improved in the twenty years or so since I contracted it, but at the time it was being characterised by the idiot press as 'yuppie flu'. The British psychiatric community enacted a master-stroke of empire-building by classifying it as a psychiatric condition and effectively biasing and debasing research efforts for at least a decade (I stopped following the research after a while, out of sheer despair).
I'm left with the feeling that it basically destroyed my life, couple with a vast amount of anger at the medical profession for its lack of any real empathy, its cretinous approach to diagnosis (like debugging software with a ouija board) and its general inability to admit that there are things that it doesn't understand, yet.
While I'm a lot more functional than I used to be when I first had the illness, I don't think I've ever been free of it. I now have some long-term immune problems. My eyes are each growing a terygeum. I have urticaria, seemingly a reaction to one of my depression medications. I still have flake-outs.
I'm disappointed, but not surprised, that the medical establishment still hasn't been able to find its collective arse with both hands.
Peace to you all.