Having worked for advocacy groups for my disease, this is literally a universal issue and affects even the best systems. The only cases where this tends not to be an issue are extremely expensive private doctors who take all the time in the world to investigate for you.
Please consider donating to the Open Medicine Foundation to help people suffering from extremely disabling and underfunded lifelong illnesses with no know treatment.
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Joined 5 months ago
Cake day: July 17th, 2024
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203·15 hours agoAhhh capitalism, where insurance companies pay doctors to pretend everything is fine so they don’t have to spend money.
Yeah. Stop pretending the healthcare system has the resources to deal with unknown diseases.
If they can’t find a diagnosis, you’ll get told that you’re probably anxious or depressed, or malingering, and get told to exercise and eat healthy. This is what I was told when I was literally bedridden for a year by an undiagnosed neurological disease.
It’s a pretty horrible position to be in. My disease which is relatively common but not taught in most med schools took me three years and 23 doctors before I got diagnosed, even though diagnosis is based on fairly simple clinical observations.
2·3 days agoYeah, bluesky has a bunch of features, notably account portability, which was specifically designed into the ATProtocol.
The purpose of the ATProtocol was never to federate with Activitypub, it was to build a more feature rich and scalable “federated” protocol.
Possibly. It would make sense, people with poor health who tend to also be poorer financially are less likely to have the ability to take care of a pet.
No but cats are correlated with wealth, I’m not implying any sort of causation, unlike the post lol.
Cat people have 40% less risk of heart attack.*
Cat people are also overrepresented cohorts of wealthy people and women, two cohorts who have a much lower risk of heart attack than the most at risk cohort of poor men.
TIL: I’m a freak and pervert
1·6 days agoPeople make up the system.
I can hate the system’s structures and want to change it. Hate the elite that designed a system, but I wont hate a person for simply existing within the system.
cheers.
IMO would be a cool feature.
Because I often get posts I don’t have a clue about because I’m not subscribed to that community, take like 15 secs to understand what the hell is on my screen, and then the for you algorithm starts pushing that community even more because I stayed on it a while.
Maybe I have settings wrong or something. But is it possible to get a for you feed with only my subscribed communities?
It was down for a couple hours half a day ago
Even Lemmy was like this. Especially with the default comment sort “active”, which promotes comments that lead to arguments. My experience has been better since I switched to “top”.
I still haven’t found a good post sort that works for me. “Hot” and “Scaled” literally only promote stuff posted in the past two hours. “Top” is kinda sad because you always see posts 1 day old, and “Active” has the negative engagement problem.
The best solution I’ve found is be on an instance with downvotes disabled and sort by “active” but it isn’t perfect.
As soon as the algorithm become engagement based, instead of “positive reaction” based,
ie. algorithms now promote a post by how many reactions it has recieved, even if these reactions are negative, when it used to promote posts based on positive reaction.
So now ragebait dominates most social media algorithms.
It’s not like other services. Books are only a couple mb so it’s really easy to reupload the entire website.
Check out the piracy lemmy community megathread.
Yeah it’s got loads of domains. It’s never been gone.
Stem cells.
He’s not talking about the stem cells that can cure a select few diseases.
He’s talking about an alternative medicine thing which is basically sticking cells from your right arm into your left arm and calling it “stem cell therapy” then claiming it can cure hundreds of diseases.
There is zero evidence (or RCTs) showing his version of “stem cells” works.
The FDA bases approval on two highly successful phase 3 RCTs of a specific drug for a specific condition. You can read more about that process here
Neither psychedelics not RFK’s version of stem cell therapy has that yet.
Interesting anecdote. Though to judge by your username, it seems you may have an agenda yourself.
This wasn’t the ME/CFS article (the illness I am personally disabled by) and anyways all this happened before I became disabled.
Anyways my ban is over now, but I can’t get myself to edit wikipedia anymore. It was a pretty shitty experience and I don’t wanna go back.
And it wasn’t the only one. So much NPOV-violating stuff on most the fringe articles and whenever you edit to make more neutral tone or you remove something unsupported by citations you end up in an insufferable straw man argument chain on the talk page.
The main fun part is filling out abandoned articles and making new articles yourself. But anything showing problems in other people’s work becomes really tiring really quick with all the talk page nonsense and endless reverts.
It tends to actually be a worse problen in europe than the US.
In the US the problem is more that doctors tend to diagnose you with something you don’t have and prescribe drugs that won’t help you (pharmaceuticals thanks).
In europe, where the government strongly controls the medical system, the government has promoted rules that minimise the costs of disability benefits and delegitimise disabling illness as “hysteria” or whatever, so that the government doesn’t have to pay as much disability benefits.
Take the UK for example, Sir Simon Wessely, who based his career on claiming ME (and now Long COVID) are all in the mind, which was disproven later on. Where is he now? He was knighted by the Queen, serves on the board of directors of the NHS, leads the government’s Science Media Center. Oh and he also earns massive commissions on being a consultant for disability insurance companies.
His famous quote, which is linked to him advising UK parliament in the 90s, is “[disability] Benefits will actually make these patients worse” (because he believed they were malingerers). A quote that probably led to hundreds of deaths of people with ME starving to death.