Thank you @michaelpelusomd.bsky.social for closing your #Keystone Long COVID opening keynote by highlighting the crucial role of collective community #LongCOVID advocacy efforts & sharing @lccampaign.bsky.social call to action: the urgent, critical need for a "Global Long COVID Roadmap" 1/x

A big thanks to #Keystone Scientific Organizer @virusesimmunity.bsky.social‬ for all your care & intention in today's opening session on reenforcing importance of masking, testing & welcoming #LongCOVID patients to the symposium. Grateful for your leadership & thoughtfulness to the community.

If you also need a #LongCOVID dose of hope, a message from Washington DC. Thanks from @lccampaign.bsky.social to every patient & advocate who brought our community to the Hill yesterday. Working together across the aisle, Sen. Collins & @murray.senate.gov opened a door for US patients & families 1/x

“It's only been because of solutions and options that other patients online have shared with me, and I'm so thankful for that patient community because otherwise I would still be bed bound.” @meighanstone.bsky.social @lccampaign.bsky.social nebraskapublicmedia.org/en/news/news...

📣 #LongCOVIDCommunity: Back after NIH grant reinstatement crash, as time to organize again! Are you in DC area & want to join @lccampaign.bsky.social this Weds April 30 1030am at Sen. Collins & @murray.senate.gov bipartisan medical research hearing? appropriations.senate.gov/hearings/bio... 1/x

Thank you Calley Means for your generosity in speaking with me today as a patient & disabled #POLITICOHealth Summit attendee, to share @lccampaign.bsky.social gratitude for Sec. Kennedy & NIH Director Dr. Bhattacharya #LongCOVID commitments & preserving critical NIH clinical trial research & staff.

Thanks @thesicktimes.bsky.social @betsyladyzhets.bsky.social @mileswgriffis.bsky.social for your reporting on #NoLongCOVIDCuts advocacy. Grateful coverage shouted out #LongCOVID bipartisan Hill supporters & uplifted the patient outreach that made #RECOVER grant restorations today possible. #teamwork

Thanks @rowanwalrath.bsky.social for coverage & including @lccampaign.bsky.social: "Long COVID patients are grateful to bipartisan leaders Sen. Young, @kaine.senate.gov Chair Cassidy @sanders.senate.gov for their partnership on preserving these critical NIH grants..." cen.acs.org/policy/resea... 1/x

📣#LongCOVID Community: Just checked Office of Long COVID Research & Practice website for a resource—looks like HHS just removed nearly all content, replaced by minimal page. Hearing on Hill: may be critical time for patients to ask leaders to protect current RECOVER & AHRQ funds.

🚨#LongCOVID Community 🚨 Looking for someone with graphic design skills to help out a few hours this week with some social share graphics for a rapid-response campaign to ask U.S. leaders to protect Long COVID research funding. Anyone available? Please reach out directly! Thanks in advance 🙏🏾🙏🙏🏽

Still sick, still fighting—every day is #LongCovidAwarenessDay at Long COVID Campaign. As people living with #LongCOVID, we'll keep calling for research, treatment & care for our community until we win. Let's all keep fighting this good fight, together. ♿️ www.npr.org/sections/sho...

ICYMI @npr.org: "Scientists are making progress in better understanding Long COVID". Thanks @wstonereports.bsky.social for covering patient community needs & LCC outreach to Hill & incoming administration leaders on helping the over 17 million Americans with #LongCOVID. www.npr.org/2025/03/08/n...

MUST-READ: Dr Proal on why #LongCOVID both solvable & urgently needs accelerated clinical trials. LCC continues to engage Hill & US govt leaders on cost-effective @arpa-h.bsky.social CDMRP grants to @polybiorf.bsky.social & other top researchers NIH hasn't funded yet: www.latimes.com/opinion/stor...

#LongCOVID U.S. policy breaking news: With DC snowstorm, just-announced Senate deal pushes 12:30am vote tonight to Wednesday, but on track for Thursday AM #RFKJr HHS Secretary confirmation vote. 30 hours post-cloture nomination debate clock starts 1am Weds, so vote could be as late as 7am Thursday.

Are you #LongCOVID focused group in U.S. or globally? Would you be open to a monthly organizing Zoom meeting to share strategies, opportunities & needs? No dues or policy requirements. Only aim: flexible collaboration to foster a Long COVID global agenda & response. Any interest?

ABC News: "Long COVID impacting more than 1 million children". JAMA Pediatrics paper finds at least 1.01 million US kids suffered from #LongCOVID in 2023. Researchers found same 2022 levels—we need America's leaders to act & secure our children's health & futures NOW. abcnews.go.com/Health/long-...

Thanks Senator Todd Young for asking first #HHS #RFKJrHearing #LongCOVID research question! In response, Mr. Kennedy: --pledged to collaborate on Long COVID research & treatment --promised more interventional vs observational trials --cited at least 16million Americans impacted *Transcript to come*

BREAKING NEWS: Washington Post now reporting White House budget office has officially rescinded the order authorizing a federal freeze on grants, according to document obtained by Post reporters. www.washingtonpost.com/business/202...

An attendee just protested at #RFKJr hearing & I was just now physically struck by four Capitol Police as sat in my wheelchair in back row wheelchair seating, knocking my computer to the ground as they removed her. No apology or even recognition by officers physically hit me, as I quietly sat here.

Packed first #HHS Secretary #RFKJr Senate nomination hearing now, miraculously got in after hours waiting. In back row wheelchair seating, only a handful visibly disabled people in room, hoping more here w/invisible illness. Other disabled attendees say can't see or hear in last row here. #LongCOVID

For people in the Boston area, this new long Covid clinical trial is now recruiting — testing Abrocitinib, a selective JAK1 inhibitor @postviraltrials.bsky.social clinicaltrials.gov/study/NCT065...

With #LongCOVID #POTS #MECFS, been having very challenging recovery from back-to-back RSV & Influenza A. I managed to drag myself to briefly sit outside today, as desperate for fresh air & to feel like part of the world. Of course, a bird immediately decided my hair was best place for its droppings🫠

#LongCOVID Community: Need some limited help this week for Long COVID Campaign website URL redirects & basic SEO. Anyone in the community with these skills who is willing to help for 2-3 hours? Welcome volunteers or will pay for your time, if able to accept payment w/benefits considerations. TIA!

UPDATE: I respectfully asked this person to not send me this content & shared a church disability justice book. Like clockwork: I was told that clearly I don't have enough faith & am not believing God can "heal" me. Toxic faith blames disabled people for our very existence & has no scriptural basis.

I was just minding my own business tonight, in my #disabled body. And then another Christian sent me, with no comment or explanation, an unsolicited video allegedly of a paralyzed wheelchair user who was "miraculously healed". To my fellow Christians: our disabled bodies are not prayer requests.

#DisabledCreators of all stripes! Let’s work together in creating, marketing, selling, etc — @barrowmember.bsky.social and I are gauging interest in a #CripCoop — starting with collecting a list of wants and needs, which then would match with another coop members skills/abilities. Interested?

#MutualAidRequest: Black, brown & disabled families are being impacted by #LAFires, not just millionaires. Thanks for donating or sharing to help my friends the Shackett-Polas, who lost EVERYTHING yesterday when their home burned down in their working-class Altadena neighborhood: gofund.me/36dcaf00

#LongCOVID Community: Some folks have reached out about making an end-of-year, tax-deductible donation to @lccampaign.bsky.social. If you feel able to chip in too, every donation counts! We have big plans for 2025, but can only realize them with support: tinyurl.com/LongCOVIDCam... 🙏🏾🙏🙏🏽 1/x

Thanks @npr.org @sarahboden.bsky.social for ensuring patient perspectives are part of U.S. government #LongCOVID funding announcement coverage & NIH prioritization discussions. Let's all keep calling for accelerated clinical trials in 2025, with MORE good NIH funding bets on MORE good researchers.

Grateful to renowned cellist & composer Joshua Roman for giving his time & spoons to share his #LongCOVID patient story with leaders in Congress & advocating with @lccampaign.bsky.social last week in Washington DC. Do you want more of this kind of outreach to leaders? Let's make it happen in 2025!

📣NIH NEWS📣 $147m in more RECOVER-TLC funding, for new FY2025-2029 total $662m. LCC applauds NIH Director for these additional #LongCOVID funds & urges NIAID to rapidly obligate to clinical trials & grants to leading researchers not funded to date ie @polybiorf.bsky.social www.nih.gov/about-nih/wh...

Thanks @nationaljournal.com @erincdurkin.bsky.social for speaking with me on our @lccampaign.bsky.social outreach to incoming Trump administration health nominees & Hill Republicans on how we can best serve & help Americans living with Long COVID who need solutions & care. njour.nl/s/727028?unl...

I left Québec to come back to the US while suffering with undiagnosed vasculitis is late 2017. Because I couldn't get a specialist for over a year (and had to use ERs are regular care). The lack of safeguards in Canada for MAID is scary.

For anyone who thinks #LongCOVID waning or just recover over time—anytime I'm quoted in press, for next few days I'm flooded with heartbreaking emails, LinkedIn requests, social DMs, @lccampaign.bsky.social signups, calls & texts to personal phone. Folks from all backgrounds, desperate for any help.

ICYMI: @npr.org coverage oUS govt #LongCOVID clinical trial urgency: "It's unconscionable that more than 4 years since this began, we still don't have 1 FDA-approved drug," says Meighan Stone, executive director of Long COVID Campaign, a patient-led advocacy organization. www.npr.org/sections/sho...

#LongCOVID community: do you personally or via your network, policy analysis or press have feedback to share on CURRENT Long COVID care access & affordability in: ▶️ Finland ▶️ France ▶️ Germany ▶️ Netherlands ▶️ Norway ▶️ Portugal ▶️ Spain ▶️ Sweden ▶️ Switzerland ▶️ UK Thanks in advance for any thoughts!

[Taps mic]: Hey, hello, is this thing on? Starting today, will be posting here more & more, where doing my level best to help raise the #LongCOVID #POTS #MECFS #MCAS flags at Milken Institute "Future of Health" conference today. #LFG #FlytheFriendlySkies