NireBryce

reality is the battlefield

the first line goes in Cohost embeds

🐥 I am not embroiled in any legal battle
🐦 other than battles that are legal 🎮

I speak to the universe and it speaks back, in it's own way.

mastodon

email: contact at breadthcharge dot net

I live on the northeast coast of the US.

'non-functional programmer'. 'far left'.

conceptual midwife.

https://cohost.org/NireBryce/post/4929459-here-s-my-five-minut

If you can see the "show contact info" dropdown below, I follow you. If you want me to, ask and I'll think about it.


even specialists approach everything from the lens of their specialty. if you're out of the core path of any specialty? You're fucked if you can't get fluent in Medical Papers real quick.

I am, and I keep up with the research more than my doctors who, and this is a direct quote, "pride ourselves on being evidence based". The idea that protocol and jargon keeps them easy to read is defeated by the obvious reality that none of them are reading even those. Even the simple ones, the ones written to be easiest to skim thanks to shibboleth in the form of first sentences and ways of describing results.

Whole system's rank, no reason to leave the parts that make it obtuse when no one but researchers bother to learn to read. The point of research isn't to masturbate, it's to find things the answers eventually have practical applications to. The outsized effect on researchers is nothing compared to the outsized effect on it hitting everyone else. And in this case? The formal language keeps leading the experts-in-practice, the interface between research and people, to be able to understand the papers, taking wild conclusions from it instead.

The thing about formal languages is they only work if everyone knows the formal language. But these days, everyone just cargo cults them.

in case my ire isn't clear, it's only a rare disease because they didn't check if people had milder forms of the symptoms -- they just set them to where they finally worried enough about the patients being unable to walk eventually that they finally gave a shit. But only for those. And so diagnostic criteria is set unrealistically, and the rest of us are just stuck here.

In the past we were easier to ignore because we'd just die in poverty, but the internet, and, especially, university access and then scihub, means it's a lot harder to slip through the cracks anymore. That, and some of us have, you know, backgrounds in related fields.

So of course it's now been doctors augmented their normal biases with a mythology that all these patients are going to "doctor google" and dismissing them out of hand on that... continuing to fail to realize that the patients are organizing.

anyway I've been studying this for decades. my geneticist studied it for a month and then whatever he learns from railroading patients to get them through the door in 20 minutes, telling them "its your body, i'm not telling you what to do" every time I ask for clarification.

Expertise is dead except the rare few who it matters with. It's such a shame that everyone is selling themselves as one, enough that it's impossible to find anyone who knows at least a year worth of how this works. Especially since the research is clearer and clearer and all I'm looking for is a PT referral to one who knows what the shit they're doing, and a rheum referral willing to test me for everything at once, instead of one at a time, once every three appointments, taking a quarter just to rule out one of them.

I'm willing to say this is true across all fields. Sure, the top level of expertise is talking to each other and driving the important research, but everyone else is just a clown show, partially because university and schools in the US just absolutely trained people to do assembly line stuff instead of any sort of 'you know, maybe this requires five minutes of reading a week'. Just look at the state of software 'expertise', or railroad 'expertise', or political 'expertise', or the CDC.

Anyone who has any sort of sway for how things work has no idea what the fuck is going on in their field. Anyone who does knows better than to get in a position of authority.

this isn't out of arrogance, it's out of exasperation. as a patient it shouldn't be possible to out-know the people who claim to be experts in it. and yet. And yet. And yet, and yet.


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in reply to @NireBryce's post:

i've been stuck in the loop of 'see doctor who's useless for 3 years, and specialists who refuse to write anything down that makes the next one down the line not take 6 months to bring up to speed, then be forced to move and start all over again because I can't afford to live anywhere longer, and no doctor bothered to write anything down so it starts again' loop for 12 years

all the while I've been taking notes and pulling down papers and interviewing leaders in the field, and it's just like, why is this a full time job just to make babies who refuse to listen actually treat me. just give me someone who can call for whatever test I need, and let me test all the hypotheses until I'm out of ideas, since millions of these tests are run daily I'm not taking anyone's spot.

but that would put too much power in the hands of patients.

i think the most depressing thing is even after hammering it home for doctors, they still do not respect the fact that I am so well put together and articulate because i rest for two full days before, and recover for two days after, a doctor appointment.

Or maybe that because i'm unemployed, have contracted my life so much that I do not have one outside the house, and reduced my stress as a survival strategy by cutting pieces off my existence year after year, that I can be somewhat functional. But only because of the drastic measures taken to ensure my survival, and the people I am being compared to have been unable to and so present "much worse'.