Ha yes!! Wool socks here too. Ah dysautonomia, so many different fun little issues 🫠

Hahaha god, so much me too

This is me too. I save a lot of heating in the winter but unfortunately my AC needs in the summer more than cancel that out…

It’s a reason the ACT UP example is a nice one; for a good run at least, the community it fostered helped people put the grief and rage toward something constructive, instead of just attacking each other as happens on the segment of Twitter I’m thinking of.

There’s a toxic sector of LC Twitter that thrives on malice, basically, and I think cultivating a deliberately different approach would be fruitful. I was a co-lead of Long Covid Moonshot and I think good vibes was one of the valuable aspects of that project, for ex (had other limitations tho!)

2/2

Yeah I’m bedbound and unable to speak so those limitations are def not lost on me (lolsob), it def couldn’t take the same form ACT UP did, but I think there’s still room to be more intentional about finding ways to have fun together, and even just to approach activism in a communal spirit.

1/

I actually think we do some of this instinctually, I just think we could go far if we started doing it more intentionally.

Yes thank you!! Just wanted to share for future endeavors and/or colleagues who might be interested!

Yeah I think we need to think about strategic places we can intervene, like in medical education, to make change on this.

Omg thrilled to hear this too! Super interesting about the MCAS angle, I wonder if that means there are more opportunities for intervention…

💀

Cc @chloedecanson.bsky.social just FYI!

Also, patients or caregivers who publish with Elsevier are eligible to get open-access fees waived!

I sure hope so. Sometimes I worry no amount of evidence is going to defeat the profound bias on this topic, but what else can we do.

We...desperately need more low-income people in Congress who know what it's like to navigate health insurance problems. But we live in an ableist society where it's hard for younger disabled and chronically ill politicians to get elected.

Subsidized insurance costs matter for chronically ill contractors. A lot.