C.H. Romatowski

ME/CFS LC Following feed Hmm, some kind of issue occurred when contacting the feed server. Please let the feed owner know about this issue. Message from server: Internal Server Error View profile

Sorry to keep pestering you, if the feeds become too much of a hassle to maintain I will def understand!!

When asked which endpoints should ideally be used for studies in ME/CFS, Todd Davenport is absolutely clear about what’s what: FUNCAP and PAQ!
1/4

Somehow even more ominous 💀

Someone call me when the Pitt shows doctors doing this

Right? 😭

I wonder how many people realize this is the norm.

“Households containing an adult w/a work-disability require, on average…an additional $17,690/year…to obtain the same standard of living as a comparable household w/o a member w/a disability.”

www.nationaldisabilityinstitute.org/reports/extr...

I'm doing my 2025 taxes & this year I had $19,984 in unreimbursed medical expenses. It is incredibly expensive for disabled people to stay alive in this country.

Everyone should not have to have a direct line to elected officials in order to ensure that we are not kidnapped by the government.

Omg yes

Tomorrow is the last day you can submit input.
#LongCovid #SGB

The system is so, so broken. (Or rather it works great for its purposes. What those are is what’s so troubling.)

I have wondered if it’s going to hold up like 10 years from now, for this among other reasons

<headdesk>

#LongCovid folks, if anyone has an extra 1-3 metrix tests you’d be willing to sell me + send in the mail this weekend, you’d be doing me a big favor

Share Your Voting Story The Center for American Progress (CAP) is seeking to understand disabled people's voting experiences. Rarely are disabled voters highlighted when talking about their right to vote. CAP's Disability Ju...

We at @americanprogress.bsky.social are gathering stories from disabled voters about voting accessibility (particularly looking for folks from IN, MO, MN, RI, TX, UT, & WY). Please complete this Google form if you're interested in sharing your story:

#CripTheVote

:)

dsausa.org/join

Well done, thank you so much for doing that.

Can anyone point me to a resource on how sign "Long COVID" in American Sign Language? I've seen various ways from spelling it out, to using the sign for "Coronavirus" or "COVID-19" followed by "Long" or "Stay". I'm curious if there is any official guidance/recommendations. Many thanks 🙏

Margot and Anne Frank died in Bergen-Belsen as a typhus epidemic killed 17,000 people

Let me be clear: I’m glad Kristi Noem was fired. But we still have to abolish ICE.

#TripleTheNIHBudget

This is absolutely an #NEISvoid issue

Want to help disabled people living in isolation? New project will help disabled people make phone buddies with other disabled people and allies!

How many disabled people are there?

Graphic from the CDC.

If someone is going to get queer bashed if they show up as their full selves in public. If someone is going to get COVID (and become futher disabled) if they show up in public. I mean-- what is it that you expect THEM to do? Maybe YOU are the one who needs to do something to make things accessible.

really tired of conversations about how we need to get people to spend more time offline that don't acknowledge that one of the reasons people ARE online is their access needs aren't being met in physical spaces. This is especially true for queer people and disabled people.

Retweeting the posts about all the actions @nycplan.org provides not only to flag for New Yorkers, but also as a replicable model for other issues…

#LongCovid #MECFS

6. @nycplan.org's next membership meeting is on March 15 in Brooklyn. If interested, contact info@nycplan.org to connect with us.

5. Join NYC PLAN at our Queens People's Assembly on March 21st - nycplan.org/peoples-asse... - Bring your friends!