I can see the potential confusion, of course. I spent years in PEM before I even realised it was delayed, and pre-internet—when patients very rarely got to talk to one another—that was probably common.
One of the things I'm trying to get clear in my head (and not succeeding) is whether we need more than one term, or if that would just make things worse.
Personally, I found Trish's descriptions of rapid fatiguability and PEM as different concepts really helpful, but of course I saw it through the eyes of an experienced ME/CFS patient. It might have been a lot less helpful before I'd understood PEM as a consequence of previous exertion—which is delayed, but can both catch up with itself and compound.
I think back to when I was younger and when I wasn’t in PEM outsiders might have thought my function in the sense of going on a night out or something was ‘normal’. I’m not sure that the ‘after’ of that however was much less extreme in debilitation than when I’m in PEM now (of course I can’t do anywhere near that these days to cause it however) but I couldn’t move or wake. But had been dancing in loud music (yes probably pushing thru with adrenaline not realising) having saved up rest before etc. there were nights I’d have to come home having had a funny turn or felt unwell, hence I underline the ‘when I’d made sure I was well rested’.
I was definitely extremely PEM-y because when I was in situations like uni (days where lecture attendance wasn’t monitored) outside of exam type periods. On the other hand I couldn’t function day to day anywhere near the level of my peers and having been an athlete as well as quite academic/lots of that at school it’s a fair comparison - I simply couldn’t have reliably got to five days a week of lectures and sit in the library or get what I needed from it after as I’d want to get home to lie down. I’d also drive because I knew I couldn’t bus or walk in (I think I knew then but didn’t have the words for oI but knew the walking drained me). But back then it wasn't really acknowedlged as that
however when I wasn’t in a point in time where I could follow my body’s lead I wasn’t going out but just that trying to eg do work day after day would lead to days I’d not wake up and even after goodness knows how much caffeine had no chance of brain working and that going on for days whilst I crossed my fingers I’d have enough before my deadline when it switched back on I had any chance of getting something in. That cumulative of any form of 'normal' was actually far worse on my health than doing an individual thing within a situation where I could then rest that off. It was the forcing the body continually when already done-in that bit from day before that was most long-term punishing and harmful.
I think if we - who have a fighting chance from our experiences of splitting things out and getting better terms for it - can actually manage to describe these different parts that ALL contribute to a horrific debilitation, limitations and what is poorly currently just hand-waived as ‘fluctuating’ then it actually could be the most important thing to help newer people understand they have the illness, what might be their limits vs different reactions showing you that.
most importantly when someone mentioned fatigue clinic advice - it is so poor,
if well-intentioned (but either based on lazy listening or asking people in a situation they are too tired and to inexperienced to know) that it excludes people like I was. And in fact/reality harms and gaslights and does incredible life-long damage by that (what name do we call what they are choosing to do?). And I think I’ve had the most typical type given the sleep reversal PEm extremity and other stuff - yet spent years thinking that as I could theoretically walk as fast snd well as others on x day I didn’t have this fatigue thing branded as having to break things up. And of course I didn’t think I couldn’t walk on those x days I had PEM because I just thought I was pathetic being unable to wake up.
This, which I think is me/cfs, is the area that hasn't just been neglected but treated as the collateral damage within its own diagnosis (treat it as if it isn't that, and rescue those with something different by fishing them out and using being able to do these things continually as it is just fatigue as a filter and then not just abandon but often worse to those who have the actual thing - it used to be because people sided with certain names we don't mention that 'the illness doesn't exist' and now it is because people are conned and lied to that there is nothign they can do - once they have been part of a system that damaged us to that extent).
I think we have to not keep doing over having information for me/cfs just because we are overly concerned about the just in case, I have ended up finding if I call it fatigue people get it, they beleive the bits that go tired in front of them, it all explains they hell they put me through, it isn't OK. I'm not saying exclude people, but I do think we need to make sure we aren't side-tracked from getting the description of me/cfs right first before thinking of the other ifs and maybes. It is an idiosyncratic illness so it is hard enough trying to get those specifics right without turning it into catch-alls on each point (and not being careful about the wording).
so these things are important to not get lowest common denominatored because I think then they end up useless. Fir this. Certainly fatigue clinics stuff is hugely harmful to me due to this. I think we can manage to ask and understand hopefully being asked the tough questions and realise they aren’t to offend or exclude but perhaps to be a bit more accurate in peeling the onion on the components/ phenomena
I know and say experience because I had years eg stuck in various hells of either work or others enforcing things like sleep hygiene that just harmed me and made my illness worse very fast and made me feel like I was going mad and in a dystopia. But also even when just trying to hold onto a job with adjustments and leeway the build-up of waiting for that big rest every six weeks because the evenings and weekends didn’t cut enough catch up (and PEM would happen too on working days I’d sleep thru alarm etc) I think many of us are most of the time in situations where these things ‘layer’ on top of each other because we never get to fully rest off that pem, or don’t rest of the exhaustion so it adds to the cumulation which I think hits as PEM - but that’s so hard to tease apart without being able to think thru which ‘pattern’ might be separate to another.
but yes anyone saying this is really hard I 100% agree with!
