Case in point from Reddit just now:
Having fun at the ER
That behavior is straight up weird. "You can control your body" is absurd and obviously inappropriate. Good grief, the manners.
But I call BS on no one having heard of LC. I'm sure this is what they said, but it's completely unrealistic. So the question is whether they are officially told to say this, having decided it's their preferred way of dealing with "those patients", or if it's an unofficial cultural thing, where they all just play along in a sort of hush way, and who knows what they say about it in private. I'd say the former is far more likely.
We know for a fact that many governments and their respective health care systems had internal memos that circulated about LC by 2021. And it's too big to be entirely ignorant of it. It's the size of the lie: never heard of it. Zero chance that this could be true. They could all think it's a bunch of crockery, but of course they have all at least heard of it, or at least most of them.
I believe that’s far too generous of an interpretation. As we tragically saw with the death of Maeve and many others before her.
Yup. She and others did die, and not only do they still don't believe in it, most of the people involved would make all the same choices again. In fact I'd say that 99.9% of physicians would say that no one has ever died with ME/CFS being the primary cause, or at least the reason. Instead they reinforce their beliefs of how powerful their "mind-body" crap is. It's especially awkward considering that the primary cause of death in this case is like a coma. No one dies of being in a coma. People die of not being kept alive when in a coma. The question of whether coma is deadly can be sort of philosophical, but in practical terms it doesn't take much more than a high school degree to be smart enough to know about the basic cause-and-effect at play here.
To that extent lack of knowledge of a concept of Long Covid isn't really problem in A/E and may even be an advantage because it will mean that people with pulmonary embolism are not sent home as 'just Long Covid'.
It matters because from the perspective of the patients, we can't know. We can feel as lousy as some people will feel a few days before they die, and it can turn out there's nothing that medicine can figure out.
And it could be an embolism, or a stroke, or cancer, or a number of things. But from our perspective it's not possible to know, and, really, if physicians understood how completely horrible we feel, they would find it absurd that people don't seek immediate medical attention. As patients, we have to make impossible choices, with one option being likely death, and the other being humiliation and gaslighting.
And when you consider how extremely hostile ERs are to us, not just with the contempt from staff but the loud noises, bright lights, uncomfortable chairs and a general attitude that is fine with leaving people crawling on the floor with zero help, it just emphasizes how absolutely horrible we feel that anyone would force themselves to go there, and how anyone with minimal common sense would find it reasonable to go to an ER when things are that bad. Especially when the general degradation in primary care means very few people have anything resembling health care that isn't strictly for emergencies or specialist treatment anymore.
