There is no plausible way of doing that, though, so the whole issue is moot. It's not possible to reach even a majority, let alone influence them, and it wouldn't change a damn thing anyway, if that excuse went away completely, it would simply be replaced by another, and if that excuse went away too, so would it, and so on and on.
I don't think you are. Those reasons are not coherent, though, and they ultimately don't matter, as we could dutifully follow everything they expect of us, we could 'behave' the way they want us to, and they'd just find another excuse for it. Two things can be true at once.
Nobody real cares you mean? PwME and their loved ones don't count in this context. Like they say on Succesion: No Real Person Involved. [To clarify I'm not implying you personally think this]
While sometimes it might feel like it's a bubble thing, something we only perceive because of our unique (it isn't) experience of illness discrimination, this is a huge problem that I keep seeing in other communities, even in discussions on general forums. There is a sub-reddit for chronic illness that leans more towards the 'respectable' illnesses, mostly diagnoses that no physician would reject, and you find the same despair at this cruelty and negligence, the same "have other people also completely given up going to doctors anymore?" and resulting misery.
The growth of psychosomatic models during that time explains this far better than the incoherent reasons written down, frankly. This is about the time Wessely was mouthing off and getting a lot of traction, warning about dangerous militants and so on. He and his gang made pwME extremely unpopular, working the press to their benefit, and this is exactly what they wanted out of it: kick us out.
As ever you sum this up so well.
Agreed, which is why if we have a breakthrough we need to hold institutions to account, not just for justice and change for pwME but to shine a light on the wider issues in medicine.
We could start with the associations, where only a few people have a say in what’s being promoted by them. I’m not saying it’s a quick fix or that other excuses can’t be made for not seeing pwME/CFS, but that is still no reason for not trying to get the associations on board with science.
The LC communities I was in outright rejected ME/CFS at the start, but they embraced all the woo they stumbled upon. It was far far worse than what I’ve experienced in ME/CFS communities, only some of the pwME/CFS were the ones trying to say that they’ve already been down that road and it leads nowhere.
This is a good point, reading threads dissecting papers and such on S4ME is maybe the best advocacy tool we have to directly reach other patients. I'm not sure how to scale it but maybe there's a way.
Fair point, after all I am one of those members!
I say «I have OI, which means I rapidly start feeling very unwell when sitting or standing».
I am not certainly I agree, sadly. There are many people who encounter S4ME and feel very attacked by what is said here - that few of these join or comment is to be expected. There is a lot of contempt expressed for many of these ideas here, and, whether correctly or incorrectly, many people who have received or come to identify with these diagnoses absolutely understand these as attacks and as dismissal of their suffering. Referring to MCAS as an "imaginary disease" or "woo" tells the person who understands themself to suffer from MCAS that they are a hypochondriac and/or stupid enough to be taken in by charlatans. In the best case scenario, that is, that they understand this discourse not as denying their suffering but as contesting the utility of a particular label for that suffering, the consequence of accepting the positions expressed here means that the patient is cast back out into the wilderness, with no name for what they are experiencing, no community to rely upon, no hope of help, no research being conducted - it means that they are stuck in an abyss of misery and will die there, unacknowledged. None of that is easy to accept.