Yes, of course fatigue - by whichever name you want to call it - is a huge part of the ME experience. Every time I suggest on some forum that we should drop the terms fatigue/tiredness I get pwME react with 'but I am so so so very very tired!' Yet they also, always, without exception, go on to say something along the lines of 'but ME is sooo much more than fatigue' and 'I wish people would understand it's not just being tired'.
That's why I'm not saying ignore fatigue but, as a stop-gap measure, fold it in under 'feeling ill'. This could be expanded upon by then listing a range of symptoms to describe 'feeling ill' and one of those symptoms could be feeling utterly exhausted for no good reason. [This may not be the best thread to discuss the finer details of exact phrasing but I want to give any NHS writers sneak-reading here something to think about]
I think a big part of why everyone defaults so easily to using fatigue or, worse, tiredness is that that's what we - patients, doctors, everyone - have been 'trained' to do for decades via the name CFS and doctors asking us if we feel extra tired or fatigued - sensible when looking for other illnesses - but never asking if we feel extra ill let alone if that feeling extra ill has any strange relationship to exertion.
Calling our symptom complex fatigue or tiredness is a cultural habit that unthinkingly gets passed down the generations. Habits are hard work to break but we can try
I wonder whether, if there is a supposed 'one day we will look back' that comes, this will actually be the case?
I know that for many years 'pre-ME' and 'when it was almost certainly ME' and 'after diagnosis, definitely ME' those who are around me would describe it as 'get really ill just from e.g. a trip, evening out, hard work thing' and so on' that others didn't end up getting ill from, just tired
When people go pale and seem to have something that looks like tonsilitis or flu and can't lift their arms is it really fatigue. And if we can't use the term 'PEM' than would it really be less appropriate to use the term 'ill' rather than 'fatigue'?
And I only of recent years thought it was ME/CFS I had because the daily symptoms from the rolling PEM where rheumatic, along with exhaustion - you can imagine which conditions along the lines of I was never investigated in but seemed far more close fits purely by actual symptoms.
Apart from the PEM-pattern. And that was 'not waking up', not in a can't get out of bed, or brainfog (in layman's assumptions) but literal can't wake and literal couldn't move nevermind get out of bed from x day's work (or indeed, to prove it wasn't stress-related, 'day out' when travelling).
As an awkward side issue whilst I'm remembering it:
The only thing that might overcome that strong PEM is adrenaline when basically metaphorically 'attacked' by unkind others (or sometimes you have to force yourself through due to committments and learn how to set 25 alarms and spend 5hrs dredging yourself to try and do it). I mention this because of the irony of these rhetoric-driven luddites who it was therefore unsafe to be around when in PEM, but were the ones who believed that by making it so they proved it didn't exist, and by doing such dangerous things also proved that whilst you are in PEM but standing and in fear of them it is 'something else' because you can't talk back to them as well as you might and they are being illogical so how can you respond anyway without also sounding so. ie your personality isn't 'the same'.
I think this phenomena of how those in serious PEM 'look' when being abused/under attack/treated inappropriately in certain conditions is perhaps what BPS has been 'toying with' as a game when they game up with their various ideas somewhat. You aren't going to be in a great state in this situation. And I imagine most people in a hospital situation and maybe many appts (due to not sleeping well because of your alarm clock the next day, travel and wait) will be in PEM due to the bright lights, noise and so on.
I wouldn't want to mention it, but many will either be in or come across such unkind and inappropriate situations and so one day (perhaps not in these descriptions) this does need to be elucidated as it is a phenemenon well-explained (ie its not just rational, it is caused by inappropriate behaviour of others to people who are ill) by the situation, but that has been twisted and used as if it is a 'symptom' pointing to something else entirely (the classic pretending what is elicited by inappropriate behaviour of others is actually a 'manifestation' by pretending 'I don't get it/see it') that 'primes' others. SO maybe one day it kind of needs to be tackled as pre-bunk/warning. Particularly given certain 'differential diagnoses' that might lurk. And put into terms like if you had a serious acute case of x, you wouldn't expect good functioning if someone came at you shouting at you and trying to force you to do y - whatever other illnesses that happened to be.
And then of course if done repeatedly eventually it leads to even the adrenaline not working.
It is so tricky when you imagine the various different dimensions of audience and the ways they might 'test' things or choose to perceive stuff. And the when in PEM and rolling PEM is tricky that way. It's going to relate to the situation and 'stimuli' too.
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