long covid sucks so much y'all

Then there’s long COVID, which the administration effectively ignored in its push to get Americans back to work. A few years ago, HHS released a report finding that tens of millions of Americans were suffering with long COVID to one degree or another. That didn’t change the admin approach tho.

NEW: "We deserved much better, much earlier." RECOVER's first clinical trials are failing. And people with #LongCOVID say the federal research program ignored their concerns. One behavioral trial even tested...computer games. @betsyladyzhets.bsky.social's latest 👀 thesicktimes.org/2026/05/12/r...

It's ME/CFS Awareness Day. A great day to watch Unrest, get mad, and realize that this is a common medical condition with virtually no support www.youtube.com/watch?v=XOpy...

Marcin inspired me to build some Keyboard Maestro macros and re-install Karabiner Elements and I'm very happy about it. Really amazing resource!

I wasn’t planning to write anything for #MEAwarenessDay this year but I’m at my Mom’s & she pulled out a bunch of old photos for me & I’m just so angry for this little one. She deserved better than to have her fate sealed by misogyny & ableism before she reached 8 years old. #GreatestMEdicalScandal

I won't be able to make Friday's Bay FC game... if anyone is looking for a single, I have a pitch-side field club seat and parking pass that I'd be happy to part with for less than what I'm allowed to list for resale via Tixr hmu!

i'd probably be involved in having more babies if you cured my long covid already

As a kid I went to nature camp in the high desert of eastern Oregon a few times. Beautiful, desolate scenery with lots of fossils and rock formations. Sagebrush abounds. Anyway, one night my cabin counselor decided to tell us all a scary story. But because it was nature camp it was about hantavirus.

Here’s how it’s going with the Stanford Long Covid clinic: I got an email in November canceling my made-a-year-in-advance appointment because the NP was leaving. Without asking, they rescheduled it for May. Last week they canceled it with no reschedule at all, because the replacement NP left.

Acorn is a fascinating product from the team at @blackskyweb.xyz for anyone who wants to set up their own ATproto-powered community...

Three have died and one is in ICU from hantavirus

Nebraska's Medicaid work requirements start today. As I wrote for @motherjones.com, work requirements are just cruel and also, Long Covid is not on the list of conditions that could qualify you for an exemption. www.motherjones.com/politics/202...

noooo

During therapy today my therapist asked me for my advice for other patients with LC, and I gotta say I was 100% here for it.

“These patients are working and sometimes the only working member in the family, so they feel like they have to keep on working." www.spokesman.com/stories/2026...

it sucks to still have to do this because I have long covid and socializing (and going to an office, or doing an errand, or...) triggers my symptoms. and it's even harder now because i risk reinfection every time

[spoiler for The Pitt S2 in thread]

Hey folks! I'm selling my tiny house, it's all prepped and ready for someone new to love it as much as I did. If you're interested, please reach out, I'll leave DMs open for a while! Happy to answer any questions, and I've got a more detailed sales flyer I can share upon request.

meanwhile enterprise security companies have told me that they won't support passkeys because they are a consumer tool not an enterprise one. so i guess they're for nobody (I like them)

Spoke today at the AAP/ASCI/APSA Joint Meeting in Chicago about Long COVID, the impacts of patient collaboration, and the progress our field is making. Very grateful for the opportunity to spread the word and for the organizers to include a patient on the panel!

Just called my senators to ask for them to sign on to a "Dear Colleague" letter supporting LC research funding in the next US federal budget – deadline is today! Please join me: win.newmode.net/longcovidcam... (And thank you to @lccampaign.bsky.social for organizing!)

A friend of mine caught COVID from a high profile mini-celebrity on Twitter when he stayed with her and her husband on an organizing trip. For her, it turned into long COVID and ruined her health.

Heading out on the road today, to keep spreading the word about Long COVID and the lives it destroys

You may not know @taskmaster.tv. It's hilarious & joyful. I begged to do it, worked out my schedule a year ahead of time to make it happen & got to do the best show on TV w/ the loveliest ppl. Ep 1 is out &, trust me, you need this joy. All seasons free on youtube. www.youtube.com/watch?v=oRfH...

I'm moonscrolling

I feel like an astronaut in the ocean

And if you went to the (sadly closed) retail store he'd just be hanging out and eating lunch, always in the hat

Preprint: "Our findings indicate that SARS-CoV-2 maintains high household transmissibility and requires substantial medical resources in the post-pandemic era." (Over a third of Covid transmissions in the study occurred before infected people showed symptoms.) doi.org/10.21203/rs....

Reminder: including alt-text on your images is helpful in many ways! It increases accessibility, can add context/detail, makes search more effective, & can improve your reach (a lot of us won’t re-share images without alt-text). If you set it as required in accessibility settings, you can’t forget!

Beautiful, gutting, and utterly relatable at the same time. I am so privileged to have been to Julie's home and to spend some time at Beth's shrine. The kind of knowing they shared with each other is just so powerful and important, especially in a world where it feels like there's so much distance.

Kira makes a compelling offer!!!

My allergist/immunologist told me their clinic is becoming overwhelmed with MCAS patients and they’re looking for an MCAS specialist but there’s really none out there.

Science Direct: "Elevated blood viscosity is associated with dysautonomia in long COVID symptoms" By Nancy Klimas, Ana Palacio et al. www.sciencedirect.com/science/arti...

right now the astronauts are calling houston because the computer on the spaceship is running two instances of microsoft outlook and they can't figure out why. nasa is about to remote into the computer

That was a real jolt

Many Long COVID scientists fail to meaningfully draw on the insights of patient-researchers. In our Comment for @thelancetinfdis.bsky.social, we propose a solution: make all Long COVID papers undergo pre-publication patient review. 1/

Really interesting thread about Covid transmission—there’s some math but it’s so clearly explained that the upshot can be understood even if you need to take the math on faith.

i wish every enterprise software product would put a link to a detailed list of its integrations in the top nav bar

sitting between two people coughing on this flight. i am masked. they are not. i feel like it is reasonable to expect you to help contain your germs in close contact in this day and age. i certainly try to do so myself, even if i just have a cold.

RECOVER-TLC is hosting another webinar today, sharing updates on the Long COVID clinical trials program. I will do some live blogging here and might have further writing at @thesicktimes.org (if they share anything newsworthy).

if anyone wants to send me to Amsterdam for this I am available

I'm looking for excellent Svelte / SvelteKit contractors in the US with current availability. If that's you, slide into my DMs or email me at [email protected].

the media is now telling people to work from home to save on gasoline, immediately after their years-long crusade to tell us why returning to office is best for everyone. this isn't a gotcha, it's an example of how contradicting demands allow the ruling class to blame us no matter what we do

i need a new usb-c cable and i cannot believe how bad this is

19% more deaths from Covid in the US than counted thru 2021 www.science.org/doi/10.1126/...

but what about THE LEGS

We got a DM the other day with a fun request from a local family: Could we find this nice BART train operator who always waved and beeped at this special little rider? And if we found him, could we deliver him a thank you card!?  So we got to work …