Anywho, there's no better time than now to put your ideas out there and invite other people to do things with you. Might as well try. You don't have to know everything before starting. You can just start.
02.03.2026 02:53 — 👍 680 🔁 206 💬 8 📌 0@chromatowski.bsky.social
This account will prob be about biomed research—complex chronic illnesses and Covid—w/some material on disability justice and organizing. ME ‘05, LC ‘23, many of their friends along the way. Very severely ill (FUNCAP 0.9). No unsolicited advice please!
Anywho, there's no better time than now to put your ideas out there and invite other people to do things with you. Might as well try. You don't have to know everything before starting. You can just start.
02.03.2026 02:53 — 👍 680 🔁 206 💬 8 📌 0I know that I sound like a broken record but I think once this society was ok with accepting mass covid deaths just to be able to eat at Applebees then all bets were off.
02.03.2026 03:03 — 👍 5545 🔁 1278 💬 88 📌 60I hate that I have to tune out some urgently important things just to survive
02.03.2026 06:52 — 👍 2 🔁 0 💬 0 📌 0
Today is Disability Day of Mourning, remembering disabled people murdered by caregivers/family.
Any journalist who portrays these stories as anything short of murder is doing serious journalistic malpractice, yet it happens so often. disability-memorial.org
NEW, from me: I talked to Aliya Rahman, who was dragged out of Tuesday's State of the Union + arrested for... standing up.
Really.
Rahman, who is autistic and has disabilities, was a guest of Rep. Ilhan Omar + was previously brutally detained by ICE in Minneapolis. www.huffpost.com/entry/aliya-...
Head’s up #NEISvoid —
02.03.2026 02:21 — 👍 13 🔁 4 💬 0 📌 0I uploaded the full version of the video that will be shared at the Symposium for Disability and Accessibility at Yale on April 10th. A short version will be played that day. I uploaded this in advance in case ppl wanted to watch and prepare questions to bring to the conference (10-10:30 am ET)
01.03.2026 19:25 — 👍 18 🔁 7 💬 3 📌 1Announcement for a webinar on GLP-1 drugs reducing symptoms in ME/CFS patients, featuring Professor Carmen Scheibenbogen and Dr. Jessica Maya.
Join us for a webinar with Dr. Carmen Scheibenbogen, “GLP-1 Drugs to Reduce Symptoms in People with ME/CFS & Identify Disease Subgroups," and learn how her research could help identify biomarkers & treatments.
Thurs., April 16 @ 8:30 am PT / 11:30 am ET
Register here:
https://ow.ly/AybC50YmL8c
This story broke just as we'd closed the timeline for the week, so we reopened it to get it in and it's such a horrific illustration of the way harm stacks up. Racist local policing + shocking callousness by federal agents killed a disabled Rohingya genocide survivor.
bsky.app/profile/unbr...
I don’t know. I’ve been sick since 2005 and diagnosed since 2018 and still desperately want to undo the misstep that took everything away. But I’m very severe. The answer to “what now?” for me is “not a hell of a lot”.
01.03.2026 16:49 — 👍 4 🔁 0 💬 0 📌 0It’s like 47 out so I put on sunscreen and took the longest walk I have since the mayoral inauguration (like five blocks today). This is not a long covid cautionary tale; this is about how it is often extremely boring.
28.02.2026 20:17 — 👍 78 🔁 3 💬 1 📌 0
@c19lap.bsky.social's Long COVID Awareness Month 2026 site is now up!
AFAIK, I haven't gotten COVID yet—but I know I could easily join the millions in the US who have LC. We must invest in research + treatment.
To show my support, I changed my profile; you can too: longcovidawareness.life/graphics
It’s wild to see even a pro athlete be gaslit about his illness by the people around him
01.03.2026 16:38 — 👍 9 🔁 1 💬 1 📌 0Oh amazing thank you so much!!
01.03.2026 05:04 — 👍 1 🔁 0 💬 0 📌 0
Today is the last day of February and rent is DUE.
I'm working with @ziibiing.com at Stand With Minnesota to raise funds to pay rents for ICE impacted families.
You can send funds to me
V: colocharachel
$:ColochaRachel
OR
submit a form to adopt a rent: www.standwithminnesota.com/adoptarent
🌻🌻
Lol. Hard to buy when that’s what the athlete himself said.
28.02.2026 19:46 — 👍 2 🔁 0 💬 0 📌 0screenshot of a Zoom chat between Miles, betsy, Torie, Funmi, and Madeline. Their names are emphasized in starburst shapes. The text reads, “The Sick Times. Watch now! Expert tips on pitching and writing Long COVID op-eds.”
Help break the stigma around #LongCOVID: share your story by writing an op-ed! To help demystify the process of writing and pitching, we hosted a free webinar with expert guests Torie Bosch, Funmi Okunola, and Madeline Miller.
Watch now, or share with a writer friend! bit.ly/4s1qJxb
Are you going to stick to once a week? I have also heard of people taking it more often.
27.02.2026 23:40 — 👍 1 🔁 0 💬 1 📌 0Yeah! Fingers crossed for you!
27.02.2026 23:39 — 👍 1 🔁 0 💬 0 📌 0No one had proposed even more to me, so far, so yeah I’ll be titrating the other med for several months before I change the rapamycin again. But very interested to hear there’s interest in higher rapa doses!
27.02.2026 23:39 — 👍 4 🔁 0 💬 0 📌 0I know someone else who is def doing better on more but I am not sure what that person’s exact dosage is.
27.02.2026 23:36 — 👍 2 🔁 0 💬 1 📌 0
So microdoses of rapamycin are going up? Anyone done the titration from 6 to 12 or 15?
Any changes in how you feel on the higher dose?
I’m at 8. I waited a month and didn’t notice a difference, then also adjusted a different med. Three months later I def have a bit more energy; I’m inclined to attribute it to the second med but it’s possible the added rapamycin just took time to make a difference.
27.02.2026 23:35 — 👍 4 🔁 0 💬 2 📌 0Someone close to me asked me to share this gofundme to support families at a Spanish immersion elementary school in Saint Paul. I know there’s a lot of asks but the need is tremendous. www.gofundme.com/f/help-adams...
27.02.2026 18:18 — 👍 89 🔁 62 💬 3 📌 4There is now a GoFundMe to support Nurul Amin Shah Alam's family. www.gofundme.com/f/standing-w...
27.02.2026 20:09 — 👍 149 🔁 127 💬 2 📌 3
so many people message me and ask “what is the need now? and “are all the needs met?”
the needs are endless. we are trying to patch 1000 holes. fuck ice. fuck trump.
A major challenge for our times is to avoid becoming callous. Some people seem to be truly failing the challenge.
27.02.2026 18:37 — 👍 240 🔁 40 💬 5 📌 0Had a conversation with a friend earlier in the week strongly suggesting that she should get off Twitter. I usually never say anything but I have noticed that she is progressively less well. I think that platform is exacerbating this.
26.02.2026 23:04 — 👍 260 🔁 21 💬 9 📌 0I can’t stop thinking about this.
27.02.2026 14:46 — 👍 903 🔁 219 💬 34 📌 5
It sucks that the lack of a social safety net is turning everyone into a case manager for eachother.
A healthy society wouldn't force stressed out broke people to do uncompensated case management labor for more stressed more broke people. And as usual that labor mostly falls on women and queers.