Talk to autistics about things Medicaid doesn’t cover that they need! Talk to them about what losing Medicaid coverage means for them! Cover the existential threat to home and community-based services that keep autistics in their communities, not in institutions!

I really need health care reporters to get educated on ABA because I am extremely tired of seeing stories about ‘autism services’ being cut and then it’s just ABA uncritically represented as the best thing ever and no discussion of services autistics have actually asked for and benefit from.

Please support Emily if you can! Being able to access this kind of care can massively impact quality of life.

Mother Jones is hiring yearly editorial fellows. Deadline is April 26 to apply (not involved in hiring process) www.motherjones.com/careers/fell...

Would love to see someone write about the intersection between this and the pressure to have a "positive attitude" when living with cancer or chronic illness. @mecfsscience.org did a very interesting article about the cancer thing a while back

Reading the new OECD report on Long COVID as a clinician is a sobering experience. www.oecd.org/content/dam/...

We're getting ready to send the letters from ME/CFS Advocacy Week! Make sure you sign THIS WEEK! We're asking State Medical Boards to meet with our community & support efforts to get ME/CFS questions on national licensing exams. Sign: https://ow.ly/vLAK50YzkCb Solve M.E. #MEAction Network

Survived & Punished, a grassroots abolitionist organization supporting criminalized survivors of domestic & sexual violence, is celebrating its 10-year anniversary! Register for this virtual April 28 event here: www.eventbrite.com/e/10-years-o...

The lesbian urge to go to the moon

please send a few bucks to Priscilla if you can, a comrade of mine who's had her life upended by RICO charges around Stop Cop City for attending a music festival

Update: It looks like the Mayor and his team have answered all the questions they're going to for the day. No response to mine or any of the others about CityFHEPS, but I'm going to try to jump on earlier if they do one of these again! Thanks to everybody who boosted here

Sent this one to a friend who just responded "That subreddit has a lot of people from Long Island in it"

If any Long Covid or ME/CFS folks are on Reddit, could you boost my question to @mayor.nyc.gov about expanding the CityFHEPS voucher? Tl;dr the issue is that you can't qualify without being in a shelter, and you can't get into a shelter if you're "too disabled" www.reddit.com/r/nyc/commen...

This looks like a great story and I may be talking to Rachel about my own personal experiences (failing to get into LIHTC housing!), but boosting especially in case there's someone who can speak to actually living in one of these buildings.

So glad to see the horse got cake!

This story will probably be new to people outside of the ME/CFS community. If so, you should read it. Then please consider that tens of millions of people in the US deal with this and overlapping/similar illnesses, and maybe ask yourself if you could maybe play a bigger role in helping us.

And the grief just keeps coming (alt text in the top reply btw)

Heartbreakingly beautiful piece. Very much comes with a trigger warning for ME death by suicide (a crisis is in our community), but if you are able to read it, I think you will find it...comforting? I don't know exactly. It puts words to things. Thank you, @julierehmeyer.bsky.social 💙

Btwn the craven decision to publish a book by the VP, the harlequin dash AI bullshit, and now this … just a banner work for HarperCollins being a soul sucking shit show of a company

It’s Easter Weekend🐣 Please help fund new life free of abuse & neglect. Details in fund. I don’t want to die. Thanks❤️ 💸Fund: chuffed.org/project/161937-help-anna-escape ☕️BMaC: buymeacoffee.com/Halcionandon 🎁Amazon: amazon.com.au/hz/wishlist/ls/1B9A74NSROTQZ ᯓ➤Beem:@halcionandon #MutualAid 💸💕

Source Callout: for a story at the Guardian, I'm interviewing folks who were asked to keep working with someone after sexual assault or harassment or relationship abuse, and told to stay silent "for the good of the movement" (more info in pic with alt text). reach out on Signal @ lex_mcmenamin.68

Thrilled we have this new Comment out in @thelancetinfdis.bsky.social, arguing that to give Long COVID scientists more incentive to incorporate patient expertise throughout the research process, LC papers should all be subject to pre-publication review by patients. Free to read w/registration!

Rachel puts huge amounts of time & effort into fundraising here to help get rent paid for people still affected by the immigration enforcement surge in the Twin Cities. Barnraising, she calls it. Now she’s asking for help not even for herself, but for a friend. Please help a little if you can?

Please donate & share to help a #pwME who has been involuntarily committed to psychiatric ward - #MECFS is not psychological! whydonate.com/fundraising/...

I don't really have spoons to do a whole new post for today but I'm trans, there are trans characters. There are lesbians. They fuck, they suck blood. We love trans lesbians here

"The majority of those at risk have functional limitations that would make compliance genuinely difficult, yet they don't meet formal disability criteria that would exempt them," said an author of a study looking into who will be impacted by Medicaid work reqs. www.medpagetoday.com/publichealth...

A law professor told me on background that depending on jurisdiction, witholding medicine may not count as as disability discrimination. I'm still having trouble wrapping my brain around that when I see stories like this.

Killing people. Not just Renee Good & Alex Pretti.

Also if someone does know the specifics of how prior auths work with off-label prescriptions, I'd be very curious to learn about that!

Oh did you want 3300 words from me on today's IOC sex testing rules? An essay on the nature of evidence and why we can't seem to stop getting stuck in the same traps around sex and gender in sports? Wow lucky you!! www.coyotemedia.org/the-olympics...

Re IVIG trial ⤵️

Great to hear about IVIG trial results hopefully publishing within the year. I don't know how quickly that might translate to patients being able to access IVIG outside of clinical trials (maybe someone who is more knowledgeable about that world can tell me!), but I presume it can't hurt...

I would greatly appreciate anyone amplifying this or contributing. The Alex Pretti nursing scholarship is being created. An endowed scholarship awarded to a student with financial need. Preference will be given to students with an interest in supporting America's veterans. Link below. Thank you.

Allies welcome! Just check the box for “Patient Advocate or Community Member.” If Drs had been educated on ME & diagnosed me properly, I could have avoided a life destroying train wreck. I needed to be told “you have a neuroimmune disease that gets worse w/ overexertion & infections. Avoid them.”

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).

I looked into if Medicaid-funded providers who oversee disabled people living independently are ready for worsening climate events. The support they need from the federal government isn’t there, and it’s worsened under Trump. My latest for @motherjones.com. www.motherjones.com/politics/202...

My GoFundMe is a year old and only halfway funded. Help us stay safer. More funds mean more options. Homeless people, survivors, single people, women, disabled people, solitary people with no family are more vulnerable to abuse and harm. Please help.

Mooooore patternsssss

Alice's celebration of life is today March 25, 11 am PST ✨ Livestream: www.youtube.com/live/i2dj4WA...

The Mamdani administration is appealing a court decision compelling the city to expand the CityFHEPS rental assistance program—a suit he said he’d drop—after negotiations with advocates and City Council leaders failed to produce a compromise in time. citylimits.org/unable-to-re...

My son has a severe case of COVID-19. His small body can't handle it; he has a high fever, vomits everything he eats, his body aches, he's lost a lot of weight, and he's unable to walk, breathe, or move. Please donate to buy him medicine and cover his hospital expenses. gofund.me/7fc0e346

🚨A pwME in Poland (not a minor) has been sectioned at the urging of their parents. Their friend is working to help get them out and could use recs for Polish lawyers knowledgeable in these spaces or help from other PwME from Poland. If you can help, I’ll connect. #MECFS #LongCovid

HEY WRITERS (not just SF/F writers) HAVE YOU BEEN PROCRASTINATING ON MAKING YOUR ANTHROPIC SETTLEMENT CLAIM? SFWA is running a webinar event OPEN TO ALL WRITERS (not just members! not just SF/F writers!) on Thursday. Sign up here: www.sfwa.org/events/anthr...

another reminder that us New Yorkers should be a lot madder about the national guard doing this exact same shit in the subways; a thing that started well before the 2024 election btw

flying with disabilities is already hard - I’ve gotten pat downs due to my chemo port and feeding tube with no predictability, which sets off my PTSD, and that is with relatively gentle TSA agents. if ICE was doing it, would they rip my tube out? would they let me faint waiting for my mobility aid?

Waiting for somebody to write the Long Covid Novel that incorporates some of these weirdos @mldavies.bsky.social

Please do fill out this survey, and also if you know anything about who at Mount Sinai is collecting the data or what's going to be done with it, please let me know! I would really like to figure out how to get meetings with some Mount Sinai administrators because I have a LOT of beef

Hilariously, it was a rheum at Mt Sinai who told me I was “maybe experiencing some kind of trauma reaction” when it was actually Long Covid.

And btw Dial Books for Young Readers (the imprint of Penguin that was just shuttered) was also a major publisher of queer and trans books