re-reading dark matters for the 70th time

Prepping for my @survstudiesnet.bsky.social presentation next week! I was reminded that @weingartcenter.bsky.social keeps a live stream of Skid Row at all times 😀

Does anyone know of any document by an ME charity/organisation/clinic that mentions the fact that people often already experience some symptoms before they fully develop ME? This could include the 'multiple hit' theory for instance.

Adding to my critique of the WIRED article: I'm so tired of the centering of whiteness. Yes, I said it. & you might ask, "well where in the article did they mention race?" The silence is telling. It is ignorant to believe that people with Long Covid don't try cognitive therapeutic modalities FIRST -

"This is the real climate of fear that needs to be addressed. Fear of being labeled lazy and crazy. Fear of losing disability insurance. Fear of being blamed for your own suffering. Fear of having your children taken away." This is the conclusion they came to?! 😭

I...

Having the mother of all crashes

disabled person complains about something: everyone: HAVE U TRIED... U NEED TO... CAN YOU.... WHAT ABOUT...

so many comments about the caregiver coming in with pink eye. while i give grace to people (and thus why i asked her nicely to leave) because capitalism and extractive abandonment THERE'S NO EXCUSE TO ENDANGER THE LIVES OF DISABLED PEOPLE. ZERO EXCUSE. SORRY, I SAID IT. by going into work sick

company sent in a caregiver who didn't speak english this morning and who had pink eye and was coughing. this is the second time they sent someone visibly sick and i just... how many caregivers are getting very disabled people more sick??!! like luckily i was wearing my can99

In my auntie era fr now 3️⃣3️⃣

It’s my birthdaaaaaay 🙂‍↔️🙂‍↔️🙂‍↔️

the girl who saved my life two nights ago brought me a vegan banana bread cake for my birthday and I'm sooooooo emotional over it lmao. literally the sweetest people ever 😭

terrible way to end 32, but grateful to God to be able to see 33, and with an incredible support system. 🎈 many love and thanks to everyone who has been checking in on me.

I told one of my best friends last night what happened and she (also a Black woman) said "we are the safety plan", and I've never felt that so much. It is so true.

I've been thinking of recourse I'd like, and I think that I would like to ask the City to donate a stair chair for me, as well as come up with a written plan for disabled people in the city in terms of first priority upon arrival at a scene. I would love peoples advice.

at the end of the day, the only people i trust are my mama and black women.

I'm up late because I could have died tonight. My body won't stop shaking from the pure anxiety.

weaning off of hydroxyzine has been one of the worst experiences of my life. and i really wish my doctor would've told me what to expect. i don't know why doctors arent informing their patients of potential side effects when stopping medications. it is so harmful.

I have had a terrible week physically and mentally. Over the past year I've really focused on building local CC community where I live and they have really saved me this week. Dont know what I'd do without them.

New video out now! Watch our panel titled ""Against Surveillance & Spectacle: Building Global Resistance to Tech-Mediated Oppression," featuring @vashetc.bsky.social , Kim Fernandes, & Cheng-Hsiu (Shin) Yang in conversation w/ @remiyergeau.bsky.social youtu.be/GXEjOPdpfa0?...

when reviewer 1 and 2 are annoying af but kinda make sense

if i had a dollar for the amount of times i hear "thread the needle" in a policy meeting haha

really enjoy waking up for an 8am appt after a rough weekend to be told to exercise myself out of osteopenia

There are currently 320 responses, and I would love to get to 500. The survey will be open until September. Thank you to all who have participated and shared!

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.

i hate to say that i have been locked in to the cheyenne bryant tea

It's ME Awareness month! If you have ME/CFS and would like to take part in a research study, here's one for you!

reading the TESCREAL bundle for the first time and i just cnnot

unfortunately hydroxyzine was a terrible idea and now i'm weaning off and it sucks

SO excited that the Reproductive Health Care Accessibility Act was introduced today by Murray, Duckworth, & Pressley. I'm proud that @americanprogress.bsky.social has endorsed this bill & I'm grateful to be part of the the community that fights for accessible reproductive care for disabled people.

so proud of and grateful for @playersalliancehq.bsky.social

I’m grateful that @vashetc.bsky.social trusted me to share their words on the steps of HHS earlier this week. Check out their reflections on ME Awareness Day and some of the preliminary findings on their Rest and ME/CFS research study. Learn more & take the survey here: www.restandmecfs.com

To mark International Myalgic Encephalomyelitis (ME) Awareness Day, advocates participated in marches and "lie in" protests in 42 cities across Germany. The demonstrations drew over 12,000 people in person and 700 virtual participants. bit.ly/4ePzGpz

me finally realizing that I have OCD and thats why slack and discord overwhelm me lmao. I'm really glad I now have the language to explain it to ppl. Bc i know ppl are just like what do you mean Slack overwhelms you?

The infantilization I receive as a visibly disabled Black & Filipino woman has been pushing me to the ledge lately. I've already had to battle misogynoir my entire life, but the ableism in addition is breaking me.

I’m wrapping the ME community in a big, gentle hug today. We fight so hard. And today we’ll be outside the Department of Health and Human Services fighting for Medicaid access and against work requirements. More to come.❤️ #MillionsMissing @meactnet.bsky.social

The Sick Times: 'Thousands “lie in” for German ME protests' Written by Heather Hogan thesicktimes.org/2026/05/12/t...

today is a bummer, hope those w/ this horrid disease will find some ease 💙

Me to my mentor: im broke girl Her: *sends grant applications* I love her sm hahahhaa leveling me up at all times

like 5 months ago i wrote a letter to my next door neighbors on each side asking if they'd be willing to help me in emergencies etc. (because the fire dept doesn't have an optimal fire escape route for me and other things). and one of my neighbors texted me this morning offering any help 24/7 :)

today is a bummer, hope those w/ this horrid disease will find some ease 💙

me coding 300 of yall responses from my survey last night ahead of tomorrow a good problem to have but my goodness, i need a team lmao

So proud of the @playersalliancehq.bsky.social action today at EA HQ! Y'all did a great job.

is this the freaking twilight zone

everything i read about h*virus responses makes me literally RAGE. literally not surprised but my GOD.

there is nothing like watching one of your best friends grow into everything she wanted to be. literally tears over here. lol.

So many COVID safe hangs/sleepovers this past month ❤️ my heart is so full

If LA picks spencer pratt i will never trust yall again

my dads VA doctor told him that his back hurts because he's sedentary and said that all veterans complain when really they shouldnt because they are all lazy and just sit on the bed and watch tv. i am so fucking mad. im legit seeing red. u have no idea how it is to be a black vet in this country