I have a re-current fungal infection on my back. It appears when I have a flare, and recedes when I'm doing well....just like a barometer for my immune status.
Bells ringing out loud and clear here for me, Cloud! Apart from having had all the other fungal infections mentioned, starting with athlete's foot around the time of onset (and before everything else kicked in), I have had several bouts of an infection on my back. I've made really good progress with understanding how all these things affect me, over the years - without changing the underlying problem at all however - so I'll share a little of what I've learned as far as it affects me...
The basic point I would make is to reverse what Cloud said above. I would put it like this: "I have a flare when it appears, and I do well when it recedes".
In other words, for me, getting on top of fungus infection and exposure to fungus/mold is the fundamental means I have of controlling my condition. Lisa might take this a bit further than I would, in suggesting that extreme mold avoidance is the fundamental underlying issue for ME/CFS generally, and that toxic mold is fundamental to the condition generally. I'm a little less bullish about that, I think, but I have to say that for me at least, that has basically been my fundamental observation over many years. Controlling mold and fungus exposure is the big thing - and it's really, really subtle and incredibly hard to do and hard to perceive all of the exposures, so I can easily believe that it could be fundamental for everyone and many people would never notice an effect even if they did a lot to try to control mold for just a month or two.
My sensitivity to mold is extreme. Only after about 1-2 years hard work on multiple fronts did I become consciously aware of all the mold sensitivities that affect me, because before that, I was so assaulted by them all, constantly, that I had no "good" state to compare the "bad", mold-exposed state with. Many months of complete escape from mold were needed before I started to directly perceive the effects when I was exposed again. Now, I am 80-90% functional much of the time - but I can pick up mold, or seasonally it can hit me again (as it has recently) and if I can't figure it out, work out where it's coming from, and get on top of it, the symptoms all come back, one after another, like dominos - all the kind of symptoms we all know so well...
So: mold avoidance measures. An air filter is crucial. Dehumidifier makes sense although I don't actually have one, I just monitor the windows and open one at the slightest sign of condensation, and I keep a window open at the other end of the flat to keep humidity down (small, and careful about the location, because fungal spores also blow in from the outside environment so a permanently open window in autumn can be a very bad idea - it's a delicate balancing act). But the air filter made one of the biggest differences. Hunting round the flat and identifying little patches of mold-like growth, and cleaning them up, was another big job, and that took ages and was hard work because of course, the contact from cleaning the mold lays me out flat in itself. But over a period of time, I did start to get the mold in my home environment under better control. And then finally: clothes. I need a new set every month or two, really. I think I'm sweating out something mold-related, implying that the infection has taken root at quite a deep level. So clothes and bedding eventually get infected and have to be constantly replaced. Obviously it's a big and rather depressing job, and a big cost too, but it is crucial for me.
Lastly: regarding the recurrent infection on my back: listen up Cloud because I'd put money on this one! I had this going on for years, coming and going, mysteriously, and sometakes taking weeks or months to clear. All kinds of medicines and creams from the GP, all of which seemed to provide barely any help at all, maybe just a little relief. But eventually, once I'd realised what was going on, it was so simple: specific shirts or t-shirts were infected, and once I myself had the infection on my back, that was in turn infecting the rest of my clothes. These infections of clothes and bedding lie dormant for years and years. I've confirmed that once or twice, to my cost, when I've been busy and run out of clothes, go back to very old t-shirts and they've infected me within days.
Now that I realise all that, I can very carefully determine which shirts are infected, get rid of them, and move on. New clothes if necessary - but of course they too will get infected if I'm infected myself. So it's a really, really hard war to fight. I am constantly ditching 'infected' clothing. The only way I have, is to pay really, really close attention to how I feel, how much I'm itching, or how well I feel generally, when wearing different clothes. Endless experimentation, trying this shirt for an hour, then that one for an hour, until I work out which is worst. And lots and lots of baths to try to clear it. It is
hard to do, I really can't stress that enough, how hard it is to get on top of all this, but it is absolutely crucial, for me anyway. And of course it's vital to get on top of it and spot it early, at the first sign of an outbreak, and not let it slide into decline. It only takes a few days to spread and get really noticeable, but it then takes a few weeks or months to clear it. So my radar is up for all that sort of stuff all the time.
I don't say this is the whole story of everything. I have other things I manage too, to maintain my equilibrium. I haven't slept in a bed for years, I sleep on a leather sofa - I still can't tolerate fabrics and even most clothes are a problem, my head hasn't been on a pillow for years and if I ever do try it, I'm itching all over my body within minutes. I have a hugely restricted diet most of the time, and when I relax it, after a week or two I start to feel the effects of that too. All that can easily be mold-related too, of course, but I'm not sure that mold alone can explain why I've become so
sensitive to mold. XMRV might well be what explains that...
And I don't know whether all this can explain
all of ME/CFS either. An awful lot of us know we have big issues with mold/fungus, and I can very, very easily believe that maybe everyone else does too and doesn't know it - there are millions (billions?) of species of mold and they're mostly practically invisible, the effects are so subtle, that it could just be a hidden issue for all of us. Or it might just be something that's a symptom we're all sensitive to, along with lots of other things. And I'm of the "never catch colds" variety, and I think that people who are "always catching colds" generally seem to have less progress through mold avoidance - or at least, many of them make progress but are still left very sick even so - so maybe the most severe ME has other things going on as well.
But I can't help going on about it, every time it's mentioned, because it's such a massive part of my own experience, and a really big part of the overall picture of ME/CFS, I'm pretty sure of that. I think anybody with ME/CFS who hasn't looked into mold seriously, especially if they have had any kind of persistent athlete's foot etc, really needs to get on top of that issue, and prepare for the fact of dealing with their entire environment, and prepare for a war that can last for months or even years. Alongside all of that I'd place "the gut", and diet, as something everyone with ME/CFS needs to take a hard dedicated look at over months or years.
Neither of these are easy, quick-fix solutions, and neither of them leads to a "cure" - everyone I know who's made progress with these, even big progress as I have, has the same vulnerabilities in place after making that progress, and relapse can still be swift when we're exposed to mold again. But the good news is that so many people have made good progress with these things that, for sure, a lot of us are capable of improving our quality of life enormously if we pursue these issues.