What's it like to travel to #UNGA80 as a disabled person to advocate at the UN? I was quietly waiting to board the train as a wheelchair user & a woman starts shouting & praying in tongues that I "MUST GET UP & WALK". I'm a person of deep faith. This is ableism, not religion. 1/x It's trying to attend UN networking events on issues impacting chronically ill & disabled folks—with no elevator or thought of accessibility. It's swallowing your pride as carried up stairs with your wheelchair, still trying to engage after the resulting tachycardia episode. 2/x

#HHSLongCOVID livestream has started. In just first few minutes, @SecKennedy has announced this meeting is indeed the "kick off" of a new "Long COVID Consortium", cited HIV/AIDS patient efforts like Dallas Buyers Club & repeated his personal family connection to Long COVID. 1/x @SecKennedy @RogerMarshallMD speaks about his own son with #LongCOVID, cites Drs. Vaughn, Patterson & Redfield as contributors to his son's care. 2/x

Here at @SecKennedy Senate Finance Committee hearing where @SenToddYoung again just raised needs & concerns of #LongCOVID patients & how best can collaborate with Sec. Kennedy & Trump admin on research, treatment, ARPA-H efforts, pharma trial speedbumps & global collaboration 1/x @SecKennedy @SenToddYoung Sen. Young: I'm going to begin with Long COVID, it shouldn't be a surprise to you. During each of our meetings, we've discussed my interest in making sure our government does its part to address this challenge which afflicts by most recent estimates, over 20 million Americans 2/x

Washington DC Flag: Recommend wait 48-72 hours before fully engage on HHS/subagency news. ALL news will benefit from additional reporting in this evolving environment.
Assume best? Transitions messy, give it a minute
Assume worst? Take time to confirm & strategically respond
1/x

https://twitter.com/MoNscience/status/1882178556987687160

Don't underestimate impact of CONFUSION currently. Professional agency staff in midst of big, quick changes, rumors--would rather FREEZE than risk at odds w/new admin appointees & leaders. New appointees often issue guidance without clarity professional staff need & expect.
2/x

#LongCOVID Community: As been tagged into few Trump Admin health nominee discussions, I thought to share brief, non-partisan "state-of-play" backgrounder thread, with focus on *REALISTIC* advocacy openings, as so many of us have serious limits & don't want to waste precious🥄 1/x Disclaimers first: Pre-COVID, did health & nonprofit advocacy 20+ years, grateful for dear colleagues both sides of aisle & my default: always try to work together but focus on REALISTIC openings if limited resources. As ever, you may be smarter or have better ideas, so YMMV 2/x

📣#LongCOVID Community 📣 Senate Appropriations Committee just posted FY25 Labor-H and Defense bills and report text, reviewing now, will post notes & flags in this thread after parse through documents: 1/xappropriations.senate.gov/hearings/full-… Starting with "win" in Defense FY25 bill report: we got Long COVID added for the first time to the Peer-Reviewed Medical Research Program! This means researchers can access a pool of $370 million in funding. MECFS also made it as an approved condition to access these funds. 2/x

#LongCOVID Community Organizing 🧵How you can take action for Thursday's Senate NIH funding hearing:
📣Advocate stipends to come to DC
📣GoFundMe to help advocates attend
📣How to submit YOUR testimony to Congress!
📣How to request Senators ask NIH about Long COVID at hearing
1/x 📣Just like January #HELPLongCOVID hearing, we want to pack the Senate NIH hearing room with diverse group of #LongCOVID advocates. I've pledged up to $5K in patient travel stipends & @lcccampaign media support. Quick 10-Question stipend application: 2/xforms.gle/sPVBBkqTwSBPta…

🚨 NIH FY25 Senate Appropriations Hearing Now Confirmed for May 23, 2024 🚨 Why does this hearing matter so much for the #LongCOVID community & why am I donating patient-advocate travel stipends to come to DC again & organizing via @LCCampaign? A 🧵 1/x appropriations.senate.gov/hearings/a-rev… @LCCampaign This May 23 NIH Senate FY25 Appropriations hearing is one of the VERY FEW public moments before the election when the #LongCOVID patient community can organize & call for Congress & NIH leaders to better respond to urgent need for expanded & accelerated research & treatment. 2/x

THREAD: @NIHDirector announced "investing an additional $515m USD" over 4 years today in #NIHRECOVER. So what does this release say or not say & what does this mean for the #LongCOVID community? Sharing my humble take, if any of this resonates with other patient advocates. 1/x

https://twitter.com/NIHDirector/status/1757476008482193616

@NIHDirector First, the political positioning: today's @NIH RECOVER funding announcement clearly planned to temper @CDCgov staff (likely also planned) leak will change 5-day COVID isolation guidance, imperiling vulnerable & disabled folks & perpetuating pandemic 2/xwashingtonpost.com/health/2024/02…

#LongCOVID community: Folks have shared they can't attend Jan 18 Senate #HELPLongCOVID hearing in Washington DC but want to donate to help other disabled & chronically ill advocates attend & organize. There's now a GoFundMe up, if you want to chip in: 1/xgofund.me/34330e95 I'm not an entity or non-profit, just part of an informal group of disabled & chronically ill folks open-source organizing with our own spoons & pennies. As so many of us are on limited incomes, I wanted to make sure anyone who feels able to give has donation transparency, so 2/x

For other #LongCOVID folks, I’m nearing end of COVID reinfection acute phase & thought I’d share my experience & some resources for other chronically ill or disabled folks. This COVID reinfection has been a rough ride– this new variant took me down fast, hard & severely. 1/x #1: DON'T TRUST ABLE-BODIED PEOPLE WITH YOUR HEALTH WITH THIS SURGE & VARIANT. Dear friends let a sick & symptomatic person join a 10-person holiday celebration, despite knowing I’m immune compromised with Long COVID. Me & my son got COVID after always masking the last year. 2/x