i really resent the continued assertion that there’s so much anger on both sides, as if the causes of the anger are equally legitimate. we’re angry because masked maniacs are violently snatching our family and neighbors off the street, and they’re angry because we’re calling them out for it.

Dismantling the Institutional Review Board (IRB), that oversees all human subjects research, is bad. Really bad.

I think one of the saddest things about being a millennial is remembering a time when technology was advancing in a way that made life better and easier and more exciting instead of actively, intentionally worse

I think this is a generally good article but there is no discussion at all about prevention or the fact that most kids are getting sick *at school* in the first place. like yes we need to talk about accommodations & absenteeism, but we also really really need to talk about clean air standards.

“We always want more, even as gains are made.” I’m lucky to have made gains recently in my Long Covid/ME experience. And still - still, I am ruled by my body’s limitations. As long as that’s true, it will never feel like enough.

I was sick for so long before 90% of my friends noticed. Like a year and a half. Would’ve gone even longer if I hadn’t had to explain my absence from a college reunion. “Uh yeah so I’ve been too sick to leave the house for 18 months…” People were shocked. I was shocked it was so easy to disappear.

"Medical gaslighting as a service" is not a use case I anticipated! Doctors seem to enjoy that part of the job so much, why would they outsource it to an app?

The editors of the CDC’s Morbidity and Mortality Weekly Report (MMWR) were apparently fired today. The precursor to MMWR began in 1878 to address emerging public health threats rapidly. We are not “great” without it. We are vulnerable to threats from sporadic foodborne illness to bioterrorism.

NEW: 53 participants involved in the Vyvgart trial for Long COVID are calling on the government to fund research for the drug after they saw significant improvements that the study didn’t capture. thesicktimes.org/2025/10/10/v...

Michael Peluso slide from the RECOVER-TLC conference today. ADRD = "Alzheimer's Disease and Related Dementias" As someone affected, I am actually relieved to hear someone be straight about this: Long Covid "brain fog" is dementia. Enough soft-pedaling; it's a crisis.

LongCovid is "not rare...In addition to its health burden...economic estimates show...longCOVID could result in billions...in productivity losses. The FDA should consider policies that adequately embrace this new reality&allay the legitimate concerns of the American people." doi.org/10.1016/j.va...

Oof, a major bummer indeed. Probably better than just losing the stores altogether, but indie bookstores are important to have!

This is a way you know the tech oligarchs don’t actually mean anything they say when they try to shove AI down our throats. Cause they’re not investing in actually useful AI (and yes there is extremely useful non-generative science-focused AI). They’re killing anything they can’t profit from.

#MigraineChat is still on hiatus but I was wondering,... what's a boundary you've learned to set (for yourself or with others) that helps you manage #migraine or migraine attacks?

Holy crap, I had no idea that this could be relevant to me. I’m “not an author.” But I am a published PhD scientist, and TWELVE of my papers are in here. Off I go to figure out if I can join the Anthropic settlement list…

I have to wonder, though: if they delay the meeting, will that further delay the availability of covid vaccines this fall, which is already super behind the “schedule” of our current surge? Shots should have been in arms weeks ago, before school started.

yeah i noticed RFK & co left off Long Covid from the list of reasons you can get the covid vax (probably because the fuckers don't believe LC exists) but they DO include physical inactivity. For most people with long covid the disease requires limiting physical activity so...

remember folks, we cant have gun restrictions because if we do the federal government will occupy our streets, imprison people without due process, ship dissidents to foreign gulags and things of that nature

Essential telehealth provisions are set to expire on September 30th 2025. Congress needs to hear from all of us that telehealth saves lives. Sample script and call instructions: www.meactions.org/telehealth #pwME #telehealth #disability #MyalgicE #LongCovid #congress #MECFS

They didn't attempt a violent coup because of the left. They aren't destroying US science & academia because of the left. They're not embracing open racism & nazi ideology because of the left. They are adults, making choices, doing things of their own volition, and they bear the responsibility.

Is there a way to ask Libby to notify me when my library adds new titles by a given author? It does it randomly with one or two authors, but I am not finding a way to actively set it up. And somehow I keep missing that @tkingfisher.com has new books coming out???

listen the world is a mess but a judge ordered the Florida migrant prison closed, California passed their "fuck around, find out" redistricting, and James Dobson is dead this is the best net good news day in awhile, I really do think

Something we should really think about is that "the children we are starving to death were already sick" isn't supposed to be some kind of exculpatory defense, it's an attempt to inject the idea that it's okay to kill people who are sick or diseased or disabled into mainstream conversation

It’s weird to me that people keep starting new Substacks and still don’t know that Substack is extremely bad news Please get off Substack 😭 www.anildash.com//2024/11/19/...

Has anyone with #MECFS done the Stellate Ganglion Block treatment? If so, how'd it go for you? Any side effects?

murderbot! 🤖⚡️ stitchybutton.etsy.com

we’ve been hearing “covid cases are up again but if you tell anyone to mask you’ll scare them/piss them off” since 2022, yet more evidence of the failure 😞

Such an interesting source of fiber! One correction, from my PhD in nanophotonics: the color comes from the structure, not a pigment. The article gets that exactly backwards.

Calling all #NEISvoid, and all #MedSky folks. I have a series of questions I'd like to ask and would love if you could check out the thread and spread the word so we get good responses. This is a thread where you CAN reshare every part if you like, because each poses a different question ❤️🧵

“Really embarrassed for all the doctors who missed these glaring symptoms” is such an incredibly helpful reframing, thank you!

People should scream bloody murder about RFK blocking vaccines for kids. I mean it. Mothers and fathers should get hysterical. I'd rarely advise this as a strategy. But, I think it's appropriate for this. What could be more clear and stark? It's not hard to explain to reporters.

Excellent 🧵, neatly sums up my concerns about interpretations of the DecodeME study. It’s great to understand why one may be inclined toward post-viral illness; it’s not an excuse to say “oh, I don’t have those genes, I’ll be fine” and ignore the necessity of finding treatments. #MECFS #LongCovid

News Release 30-Jul-2025 Clinical trial finds safe, effective treatment for children with severe post-Covid syndrome www.eurekalert.org/news-release... "We are now running a clinical trial to test whether larazotide may also be a useful therapy to treat patients with #LongCovid" #LCKids

A coworker in MA was telling me today that he was feeling bad from the wildfire-related air quality, and I very politely and positively encouraged him to wear a mask and either make a C-R box from parts from the hardware store or just order a HEPA filter since he’ll need them going forward anyways.

This is interesting: A second COVID protein, the main protease, triggers blood clotting. This protein is *not* in vaccines used in developed countries, but it is highly conserved in coronaviruses including common cold coronaviruses. Ref Pagotto et al, www.nature.com/articles/s42....

All rejection is an ego wound, but when women are rejected, they don’t talk about it as a societal problem that men should solve.

what have been your favorite chronic illness & disability books from the last 3-5 years? (I’m playing cultural catchup since my last crash!) reposts also appreciated :)

The CDC has not provided a SARS-CoV-2 genomic surveillance update for 6 weeks. That is unacceptable

Ah, the joys of procrastinating/distracting myself into reading and editing [this thing for work] via making somewhat unhinged replies on bsky. It’s definitely a way to spend my evening! (apologies to @faineg.bsky.social for the moderate unhingedness)

One of the biggest blockbuster movies of the last year (and this coming year, since they had to go and make it two parts) has this explicit message, and yet so much of society refuses to learn the lesson. I’m talking about Wicked, of course.

Attention science and health communicators: We are hosting our first informational session dedicated to helping you share about infection-associated chronic illnesses like Long COVID, ME/CFS, and post-treatment Lyme disease syndrome. Reach out to [email protected] for more info!

Here is a good rundown of why Trump's EO on homelessness is very bad!

Easy to make fun of, but I wonder how many of these people (in addition to the one noted in the article) have Long Covid, whether recognized or not, and are feeling better afterwards because the procedure is related to HELP Apheresis, and could be removing microclots from their blood.

Respiratory infections reactivate dormant metastatic breast cancer cells in mouse lungs, correlating with evidence in humans that #SARS-CoV-2 infection increases the risk of cancer-related mortality & lung metastasis 😎 biology but double whammy for cancer patients www.nature.com/articles/s41... 🧪

People with Joint hypermobility at increased risk of long COVID or post Covid-19. bmjpublichealth.bmj.com/content/2/1/...

Thread!

A while ago, we started a #FixItFriday tradition. We keep a running list - large & small, digital & analog, anything broken or annoying - and work on it together. Today's 30-second fix: to remove AI "preview" from search results, here's the setting for Chrome users: www.reddit.com/r/techsuppor...

OH HEY ITS THE EUGENICS OF DISABLED PEOPLE WE ALL TOLD YOU WAS COMING

It's apt that corporations/governments divided the internet into SFW and NSFW & are now making it all Safe For Work, because that is the defining frame they want to place on the world--everywhere you go is for Work, not pleasure or art or love or culture. You must always Work for Them, or die.