Okay this is wild but I posted about my three year bedbound anniversary on LinkedIn and talked about LC. And it has over 500 reactions and soooo many comments. Ive had at least ten women of color message me saying they have LC. There are so many people suffering.

That is so fucking nasty. And yall call us dirty. 😭

Vancouver ppl — about a month left on this Living With Long Covid museum exhibit! museumofvancouver.ca/living-with-...

I love love love all of my IACC friends but I have never experienced anything worse than trying to do policy work for ME/CFS and LC (mind you policy is my main job). And my experience is not unique. Idk why it’s like this but I actually dread doing any policy work related to it…

Omg my auntie found this picture of all of my aunties and my dad 😂 the fro is iconic

When I tell non adhd people I hyperfocus I think they think it’s cute but they don’t realize it’s me staring at my computer screen for 6+ hours without eating, drinking, barley moving

Never realized this Jesus joint was on Bussin lol I’m here for it

I watched the whole thing because it's astonishing

Yet another indictment of the United States health system that James Van Der Beek’s wife and six kids need a gofundme because his unsuccessful cancer treatment destroyed them financially www.gofundme.com/f/support-fo...

Happy royalty and legacy pack release date for those who celebrate 🎮

My lolo would’ve been 90 today. He died many years ago but I still remember so much about him. He was the first and only of his generation to leave our barangay (Tagudin). He moved to Hawaii and then California, later bringing over my mom and her siblings. He dreamed of better for us. Ay-ayaten ka

I don’t think anyone fills me with visceral tangible thick hatred like Bondi.

📸🟧 UPCOMING 🟧📸 Tuesday, March 10th at 4:00 - 5:30 PM [ET] Join us for "Against Surveillance & Spectacle" featuring @vashetc.bsky.social, @meg-fereday.bsky.social, Kim Fernandes, @wells.bsky.social, & Shin Yang in conversation w/ @remiyergeau.bsky.social (Director, DAF Lab)

Hi everyone, I wanted to share a research study I just launched on rest, energy, & ME/CFS, open to people with ME/CFS & medical or healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS. Visit restandmecfs.com for more.

Generally speaking, I knew my ME/CFS survey was going to be tough to sort through given my own ME/CFS journey. But I was not prepared for the amount of vicarious grief I have experienced reading ONE HUNDRED AND NINETY-EIGHT responses that recount the same exact things I experience.

the stress i feel when someone says they can do after 1 pm for a meeting do i schedule for 1pm on the nose 1:15 to make it cute? 1:30 to give them time to be cool? 2 for extra buffer time, although now maybe inconvenient? pls

Holy moly, just checked the survey and we have 200 responses. Very grateful to everyone sharing and participating! Still only one provider survey completed, so if you know any medical or healthcare provider/researcher who would be interested in taking a patient-led survey, please share!

Super easy to do - I just filled out the low energy version. (Tip - I think it would’ve been Easier on a larger screen but was still doable and I have a tiny phone [on purpose])

🔗 Learn more and register to attend here: myumi.ch/R35pz 📍 This event will be HYBRID (in-person on UM's Ann Arbor campus & virtually via Zoom) ☕ All are welcome and we're providing refreshments for the first 100 attendees!!

grateful to see my bby bruv 💓

Wretched reminder that the last time I stood up was today… three years ago

I would really love if I dint get anaphylaxis once a week

ProPublica is publishing the letters of children incarcerated inside ICE facilities. If you are from another country, do not come here. Not even to visit. Some of these children have been inside almost a year and only came here for family vacation.

I am still in disbelief that I haven’t been able to see an ent doctor since 2020 because no one would mask for me. I’m so grateful I was able to today. I never realized that neuropathy and EDS could impact your larynx & ability to speak until my Covid infection took my voice. Really interesting.

That one image of a COVID placenta from a study a few years ago genuinely haunts me

Me consistently hiding my Harry Potter tattoo in shame bc JKR was the biggest let down of my childhood lol

Get your support letters in!!

Meanwhile, if you want you can listen in to the Maryland House hearing on the Long Covid bill today at 2pm! Here’s the Committee’s YouTube channel: www.youtube.com/@mga-hlt2698...

Submit Written Testimony Alert! Tuesday, Feb 10th ONLY! 8am-6pm ET SB 0392 Long Covid Innovation Grant & Loan Program Submissions are required to have a my MGA account NOT required to be a Maryland resident Please see linked 🧵 for details #LongCovid

Oh I did have a nasal endoscopy without lidocaine today and I would not recommend that ever

For all my Covid safe SoCal folks! I just had the BEST appointment at the USC voice clinic at Beverly Hills with Dr. John’s and his team. They all wore N95s upon request and thanked ME for asking! They also prepared ahead for my mcas and shared knowledge about EDS. Fantastic team

I declare this will be the year I raise/make enough to get all of my belongings. 😭 Some of you know but I’ve been living out of one luggage since 2023 when I got air lifted from Virginia. I haven’t been able to afford to get my belongings form storage. Everything is in there.

Just finished watching and thought it was brilliant!

Donald Trump approved the sale of 500,000 AI chips to the UAE just a few months after an UAE royal bought a 49% stake in Trump's crypto company.   Is this sh*t legal? No, no, and HELL no.

Just looked at the presenter list for the Symposium for Disability and Accessibility at Yale and I feel very grateful to be in the same row as @caseydoherty.bsky.social and my DISCO Network cohort-mate Kim Fernandes 😍 dandasymposium.yale.edu/organizers-a...

I am going to the ENT tomorrow finally!! but i am so PETRIFIED of getting COVID. on the plus side, i asked the doctor and team if they'd wear N95's and they've been super understanding and said they would, so I am praying that it all goes well tomorrow. Wish me luck 😭 I miss my voice so much

This study is so well done and I can't wait to see the results. Highly encourage people with ME and those who provide health care for them to participat: restandmecfs.com

I have watched the halftime show too many times. Help.

Been talking to my friends lately (who are also Christian) about how funny God is. Recently he positioned me to support a project that is somewhat of a dream to me. But it’s also affiliated with people that even two years ago I likely wouldn’t have shared a room with. He is doing a work in me.

Hi everyone, I have a last minute doctors appointment in LA and transport costs $450 plus the medical hotel $400. If you have any spare change would appreciate help ❤️ I know you always see me posting about work but it is all essentially for the free.99. 😞 Praying one day that’ll change.

I actually get into it a little during this interview with Our Data Bodies (whom I love)!

This is wild to say but in high school the police on campus would routinely gas us with pepper spray if a fight broke out, I’m talking pepper spray the entire cafeteria. they had these massive canisters. I thought this was normal until graduate school.

Disturbingly detailed analysis of my first rewatch incoming

🚨 Update: Hate attack on Amaranth Alley Pantry. Pride Was A Riot, Sac will be coordinating outreach activities from the @amaranthalleypantry this week in order to further alarm local businesses and residents about the whitepower group that attacked the Amaranth Alley Pantry.

color guard ppl and marching band folks know how much work goes into setting up a field for performance, can you imagine a Super Bowl???? Sometimes I get goosebumps thinking about it

Me: literally not a trace of puerto rican ancestry Me tonight: 🇵🇷

Also, that was indeed LA’s own Villas Tacos making a cameo with Bad Bunny www.instagram.com/reel/DUhNhxb...

great performances! (folks who didn't watch the [sadly separate] signed stream may not know that the halftime show was signed in Puerto Rican Sign Language by a Puerto Rican deaf interpreter who tours with Bad Bunny!)

My brothers first job is IT at a big Las Vegas casino and he’s just in the group chat talking about how badly he wants the Super Bowl to be over 😂😂😂😂