How else do we do it, though? People's impressions are all we have to go on. They may be describing their own experience, or an amended version of it that they think aligns better with descriptions they've read, or trying to lead the diagnostician to a particular conclusion. We don't know, and it's hard to see how better questionnaires would get around it.
We need a broader picture of ME/CFS for diagnosis, not least because PEM's now a dozen different things. The term's probably reaching the end of its useful life, if it isn't there already.
I agree that would be great, but we won't get it from a diagnostic questionnaire.
It's more likely to become apparent through understanding the whole picture in ME/CFS. If a theoretical model is created that explains the PEM phenomenon, which is then backed up by a successful trial of a disease modifying drug, we're pretty much there. More trials might be needed to find better drugs, but we probably don't need to consider PEM separately any more or even try to work out exactly what's going on.
I think we need to add in regarding long covid one really key extra difference: even those who had it the longest have only had 5yrs
And whilst we can talk about the need to warn people how important not pushing in the early stages of either is
It is a completely different knowledge base and level of experience/experiment if you had 20yrs during which there might have been a year in school pushing thru, a year in uni where you could sack off things but found you had no control of being able to even turn it on when you’d Hope , years in different jobs with different adjustments hours exertions vs different levels of illness. And during all of it was open minded until the consequences hit a year in.
And perhaps during it thought it must be ‘something else’ for a lot of it.
Vs those who had covid during this timeframe and when they couldn’t get it together in the slow return to work they assumed would just work out in the end had all of these materials out there.
It makes for an issue regarding our voice and the insight into ‘where we are coming from’ getting again replaced , this time just as the new guideline finally came out, with hcp rewriting a narrative assuming those of us who actually never had a chance to try the rest of convalescence and are now broken having a fake history stuck on us again because they want to assume we had the same ‘path to where we are now’ that those who had Covid are assumed to have.
For a start many of us never had our initial infections and overwork through them ever properly acknowledged. And we got gaslighted. If you have a Covid test that’s different for your own sanity to know there’s a chance of x,y,z.
It’s also complicated that like when the ‘post viral syndrome might be different to me/cfs’ idea is posed ‘but the issue is that you only know which you had in retrospect’ most of us are talking about these things and giving insight from the benefits of that retrospect but there are other loud voices ‘in it at the moment’ ie the stages where it still could go either way, even if they have me/cfs but got the rest in the early years.
It feels like another excuse to dismiss our knowledge under bundling us in
And it’s not good for long COVID either because whilst those til this point might have had an unusual scenario for these years vs most with me/cfs (who didn’t believe the diagnosis itself partly because the guideline was describing it as hypochondria etc) I can see things are now changing for that.
I imagine there won’t be the covid tests used on the same scale in a few years time so those getting it won’t be able to ‘prove they had the infection’ because why would they have the test ‘in case they need it if they are an unlucky one this time’.
And whilst covid clinics have been a mixed bag up til now I can see them becoming the worst of that bag and combining them just being used as an excuse to cherry pick the excuse of ‘we haven’t destroyed those who got it from long covid yet to prove it doesn’t work’ to offer what they know harms me/cfs as the only thing in a combined clinic.
In my generation of me/cfs (based on dates ill) we on the whole got abused and no respite so the dread of them yet again finding another way to claim our history is ‘sitting around too much’ when they caused it by ‘not letting us sleep or rest’ is indescribable.
I can’t speak for what some with long covid had as a situation. I imagine that varies more partly only because of what’s happened in recent years re home working if you were in certain sectors. I dreamed of and then hard to work twice the output to keep the odd day at home only after years of jobs that were wholly inappropriate in many ways. But all I ‘deserved’ given the scars the hostile environment left on my Cv and reputation by their bigotry and lack of adjustments reducing options I should have had if I weren’t an ill person and having less choice for jobs than non disabled.
Yet a kid in school has perhaps had a nightmare.
How the really defining issue which is indeed PEM but more specifically that keeping pushing that threshold leads to deterioration and in the interim either horrific rolling PEM you only notice as that due to the odd fortnight off or day of exercise or night out breaking the washing machine effect if you don’t have ‘easy days’ in a week shows itself is over bigger stretches of time in unsustainable situations (that are only confirmed as such by that after the fact deterioration that no one believes or takes responsibility for if they have bad advice).
But in retrospect to us PEM is obvious because we’ve that tinsilitis we had every time we had a night out or camping trip or long walk that eventually can’t be put down to an unlucky year . That it was every holiday not just one where we managed the travel on the day (where everyone misunderstanding the illness assumes they will see us ‘struggling’) then were a pain the the neck from day 2-6 ‘can’t even sort out their sleep to join us for lunch’
That’s very much not the same as the fatigue ability type descriptions some have of an hour of tiredness just after. Which I probably did get but just had to deal with anyway but knew by then the real butt-kicker would come the day after arrival. And that I foxed people that many nights if I hadn’t had to turn up but only did after I’d napped and was feeling ok that week (ie not a show myself at 6pm for someone’s birthday) didn’t seem at the time ‘less’ on that night that most others (if it was a drag myself out though I might collapse or have to go home early) ‘so I can’t be that ill’.
And that’s the reason why PEM is so important to get right because those of us who have ‘that type’ have been very done over for it not being all the time ‘can’t’ (until slowly our function deteriorates to ‘good days’ being appalling disability level but they are still vastly different to ‘PEM days’) and the ‘through the wall’ at the time being different to ‘seemingly a bit tired’ . And because after decades of at best insinuations we ‘mismanage ourselves’ whether it’s our energy ‘not being paced’ or all the tropey assumptions to do with fatigue nonsense
It has been like living my life not just ‘waiting’ as one of
@Kitty descriptions put it a year or so back but like holding on through all this horrific onslaught where saying stop would just result in more abuse or trouble than finding a way to soldier on (behavioural psychology with punishment and reward we’ve been coerced under) holding on by the fingernails like having the most extreme thirst any human could imagine but instead for what can only ever really be your own bed (because by then your body is in such pain anywhere else is like lying on nails and exertion) to just start the process of resting the body so after a few days it will have reduced the pain and exhaustion enough to allow sleep.
