THANK YOU again to the close to 600 people who have already called and emailed your two senators! It makes a BIG difference when senators hear from their own constituents. And every action let's them know our #LongCOVID community STILL urgently needs tests, treatment & care. 4/x

We try our best to make @lccampaign.bsky.social call & email tools usable if low on spoons or time, while also fully customizable if have more capacity & want to personalize your story, or even the asks. Say whatever you want about your #LongCOVID experience or needs—but please share it! 3/x

a cat is reaching for a laptop that says i 'm cooking on it

Alt: Animated gif of a cat reaching for a laptop that says “i’m cooking” on it

media.tenor.com

☎️Sunday voicemails to Senate offices can even be easier than calling during the week!☎️ Links again to free, editable @lccampaign.bsky.social tools to ask YOUR SENATORS to #FundLongCOVID FY27: 📞 Senate call tool: tinyurl.com/LongCOVIDCall 📨 Senate email tool: tinyurl.com/LongCOVIDEmail 2/x

a black and white photo of a ring ring telephone on a white background .

Alt: Animation of an older black rotary phone with the words "Ring, Ring" below it on a white background

media.tenor.com

📣#LongCOVID Community📣 THANK YOU to the almost 600 folks who've emailed & called their Senators! Sunday emails & voicemails CAN move the Senate on Monday! Senate FY27 #FundLongCOVID "Dear Colleague" deadline extended to Monday AM. @lccampaign.bsky.social free, customizable tools here: 1/x

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...

Long-COVID research funding was pulled, then brought back. Patients say the research is vital

Funding for post-COVID research was cut from federal budgets about a month ago. But because of patient advocacy, some of those grants have been restored.

nebraskapublicmedia.org

📣 #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

Biomedical Research: Keeping America’s Edge in Innovation | United States Senate Committee on Appropriations

United States Senate Committee on Appropriations

appropriations.senate.gov

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

The Sick Times@thesicktimes.org · 2y ago

🚨 BREAKING: #LongCOVID research grants from the National Institutes of Health’s RECOVER program will be restored following news stories about their abrupt cancellations and advocacy to restore the funding, according to patient representatives in the initiative. bit.ly/3FO8LuQ

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

NIH restores some long COVID grants

Researchers still nervous about funding status

cen.acs.org

📣#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 🙏🏾🙏🙏🏽

a sign that says graphic is design my passion

Alt: A terrible GIF with words "Graphic Design is My Passion" in ironically mismatched fonts, colors and treatments

media.tenor.com

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...

5 years since the pandemic started, long COVID patients are still hoping for a cure

They're pushing for more funding to find effective treatments. Researchers are finally starting to make headway but have a way to go.

npr.org

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...

Scientists are making progress in better understanding Long COVID

Scientists have made progress in understanding Long COVID over the last five years. Patient advocates hope that research will continue under the Trump administration.

npr.org

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...

Opinion: Long COVID is solvable, but we need more clinical trials

Some people may remain ill after COVID infection because the virus still lurks in their bodies. The looming question now is: Who will pay for drug development and trials?

latimes.com

#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-...

Long COVID impacting more than 1 million children: CDC study suggests

A new CDC study published Monday found that more than 1 million children were affected by long COVID in 2023. Higher levels were found in lower-income households.

abcnews.go.com

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...

White House rescinds freeze on federal grants, in reversal

The reversal followed criticism of the sudden freeze by the White House budget office.

washingtonpost.com

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.

Meighan Stone@meighanstone.bsky.social · 2y ago

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

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.

Meighan Stone@meighanstone.bsky.social · 2y ago

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.

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?