I haven't read the full article yet, but I would like to say that my ME is not relapsing and remitting. I never have a remission from this. I always feel poorly, and often, I feel terrible. In my experience, there is never a break from ME.
If people see me out and about, that is not a good day, or a remission, that may be a less terrible day. Or, it may be that I absolutely have to do something, or be somewhere, even if I feel terrible.
ME can be variable, but this does not mean there are huge swings from bedridden to marathons, and back again. It just means one varies from feeling poorly to ghastly.
I don't know where this relapsing/remitting idea came from. I would hazard a guess, many, if not most with ME feel some level of symptoms all the time.
Agreed. Yes!

I'm disappointed by some of the latest literature out there not emphasising PEM and getting info up to speed on that because from a 'what is the disability/you need to know' point of view
that is the message they need to perfect. So that people know we have an envelope, which for many doesn't cover essential-to-life or must-dos, so when we set a boundary it stands.
The implications being orders of magnitude more than they can imagine based on their well-person 'tired' instead of 'ill' - like 'you just gave me glandular fever, thanks' when you hear of people tricking someone into a longer walk etc.
And if you see us pushing these there will be damned good reasons, but the cumulative effects add up.
Without talking PEM and (I hate the word relapse) deterioration noone will ever understand the condition. Or the ridiculousness of the past research - because the past research
is their cliched tropes.
EDIT* and as I write this it gives me the shivers that the reason this deterioration longer term from pushing through short-medium is being dropped is heavily political/people getting tricked, because that 135 day rule is the difference between studying the illness and playing tricks with pretend placebo effects - and
is the bigotry that has drive for me what would probably be a different illness. Without this bigotry I'd probably be mild and respected. I wouldn't have had all these years of no human rights to be who I am and tell people being damn rude and bigoted to my face that they should expect to be called out for that discrimination. It's been awful. 90% of my disability has come from all this other stuff instigated directly from that myth/misdirection/sleight of hand. And here it is getting done again (what - for long covid? or has someone taken their eye off the ball in the ME charities?) I worry.
That making someone do more than their body can cope with as a default - only they can tell you as you won't see the impact at the time - will lead their body downhill to iller and iller over many months. And that being 'in envelope' is only mainaining status quo vs that guaranteed deterioration eventually.
And no people don't connect their tropes (10% more than you think is good) with us using the term 'that means they think it is psychological' - it needs to be basic terms of 'limits'. Because we 'look OK straight after', and noone is telling them any different.
People can think it is a real illness
and expect us to step up to push out limits each day thinking the impact isn't what it is. Because for some reason even the charities aren't underlining what the illness is.
It must be ever so frustrating for the few that currently do want to try and understand. The rest will never know as there is an adoption cycle (they'll read it because the early adopters will read the PEM stuff).
Variable doesn't cut it because people can see when you are pacing vs 'can't because you are in PEM' they just have been given no frame to bring this together.
Describing it like it's RA or lupus just to pander to 'communication norms' isn't going to make it that. It doesn't make it look 'more like a real illness' and doesn't aid good diagnosis. And the science now backs up PEM but not that anyway.