Richelle Sepulveda
@richellesepulveda.bsky.social
3K followers 1.5K following 2.8K posts
Long Covid, MECFS, ADHD, etc. Patient-led research is my jam. A bit obsessed with GIP.
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Reposted by Richelle Sepulveda
Link is to a blocklist, since it didn't generate a preview: bsky.app/profile/best...
Blockety block block BLOCK!!!
Reposted by Richelle Sepulveda
Genuinely never realized why the pity response to disability is so uncomfortable, even frustrating, until I realized: it's because "ohhh how sad!" is about the listener.

"By telling me that, you've made ME sad."

It centers the listener, and even sounds accusative: you've burdened them. By existing
Reposted by Richelle Sepulveda
Idaho started ACA open enrollment. Here's a preview for the rest of us.

When your rates rise and you can't afford coverage, remember that it's the GOP who made it happen.

www.nbcnews.com/health/healt...
Reposted by Richelle Sepulveda
BREAKING: Pope Leo XIV is set to effectively disband Opus Dei in the coming weeks.

This would be the most sweeping internal reform of his pontificate — and a dramatic continuation of Pope Francis’s legacy.
NEW: Pope Leo Set To Break Up Opus Dei
If Pope Leo does indeed approves a plan that effectively dissolves Opus Dei’s structure, it would be the most significant internal action of his short pontificate to date.
open.substack.com
Reposted by Richelle Sepulveda
Reposted by Richelle Sepulveda
This is good reporting on the disaster in Alaska if you're looking for a reliable summary.

This is a bigger disaster than I think most are realizing. 1500 people have been displaced by the flooding with an exceptionally complicated response and recovery.

www.youtube.com/watch?v=t5kz...
Rescue crews airlift hundreds out of rural Alaskan villages after powerful storm
YouTube video by PBS NewsHour
www.youtube.com
Reposted by Richelle Sepulveda
I see protest discourse is hitting the feed again ahead of No Kings—idk man, go, don’t go,

…but if you do go make sure to link up with an org that’ll help you get into longterm organizing and if you don’t go, make sure to link up with an org that’ll help you get into longterm organizing
Reposted by Richelle Sepulveda
Right now, Linux Mint is one of the most accessible distros. It's basically ubuntu minus a bunch of recent Canonical bullshit, it's very close to boomer-friendly.

You could easily slap it on your grandpa's computer and not worry about shit.
Thanks to Windows 11's new surveillance feature... a lot of people are discussing Linux...

Here's a good feed for
Reposted by Richelle Sepulveda
Teen Vogue has also been doing pretty good. 😁
Reposted by Richelle Sepulveda
The myth of objectivity will be the death of us all.

Subjectivity is what makes life and this world interesting, worth thinking about, worth experiencing. We are all so very, vastly different and isn't that amazing? Isn't it why we study human experience as an ongoing project? Lame uncurious trash.
“In nursing homes, neonatal units, and ICU wards, researchers are racing to turn pain—medicine’s most subjective vital sign—into something a camera or sensor can score as reliably as blood pressure.”
AI is changing how we quantify pain
Artificial intelligence is helping health-care providers better assess their patients’ discomfort.
www.technologyreview.com
Thank you!

MECFS is likely going to be lifetime for me, but thanks to patient networks I have found treatments that help and have slowed the progression.

Doctors were not very helpful, and I had to become my own expert. I see them now as partners for my care, but I am the one who drives it.
Like MECFS, some people will recover in the first 3 years, but those that don't will likely have it the rest of their life, often progressing to more severe levels.

And what helps one person recover often will not help others. Subcategories abound!
Reposted by Richelle Sepulveda
Long Covid Is Real — And It’s Changing an Entire Generation

Hundreds of thousands of kids in America are struggling with an illness that many doctors and schools refuse to recognize.e

Feature: www.rollingstone.com/culture/cult...
Kinda always kept it in the back of my mind as I developed chronic illness.

Doctors don't always really understand the patient experience, and may dismiss symptoms that, to the patient, are a big deal, but the doctor doesn't realize the importance.
They scrapped that training data, and then used the same scans but with the patients reports of pain.

Accuracy jumped to being predictive closer to 85%!

I've tried finding that study again, but it was so long ago and I was a lowly undergrad then, so it's lost to me.
Quite a while ago I read a study that trained an AI to read scans (x-ray? MRI? I can't remember) of knees based on orthopedic surgeons' diagnosis of who/where pain would be experienced. Overall accuracy for patients was low. (around 50-70%)
Reposted by Richelle Sepulveda
I wrote about yesterday’s oral arguments in Louisiana v Callais, and John Robert’s’ decades-long crusade against the Voting Rights Act: www.theguardian.com/commentisfre...
Reposted by Richelle Sepulveda
nice to see white ladies call out the "purity test" and "circular firing squad" rhetoric as total bullshit
"What do you have to say about the capitulation that you participated in?"

Cory Booker clearly wasn't expecting the pushback he got from @ivehaditpodcast.bsky.social

Full interview: youtu.be/HLfzsOVjlxc
Reposted by Richelle Sepulveda
"What do you have to say about the capitulation that you participated in?"

Cory Booker clearly wasn't expecting the pushback he got from @ivehaditpodcast.bsky.social

Full interview: youtu.be/HLfzsOVjlxc
Reposted by Richelle Sepulveda
For those looking for ways to help out Alaskans affected by the typhoon (!)
Thanks @rooster907.bsky.social for the links! There's a QR code for money donations, and a couple more ways you can help!
Reposted by Richelle Sepulveda
scott mccloud told me this was possible and i've never gotten over that it's not
Reposted by Richelle Sepulveda
We'd better build more AI data centers, AI will fix this problem for us --

*waits five years*

The oceans have boiled and the drinking water is gone but at least all the intellectual property has been stolen and now I can use AI to create a really accurate representation of Batman fucking Pikachu