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Meighan Stone

@meighanstone.bsky.social
1.3K followers 30 following 54 posts

Executive Director of Long COVID Campaign @lccampaign.bsky.social. Past: President Malala Fund, Senior Fellow Council on Foreign Relations & Harvard fellow. Single mom living with #LongCOVID #MECFS #POTS #MCAS one day at a time ♿

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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 19/04/2026
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
Thank you for taking action graphic, with headline Sign on, Senators! Message below of nearly 600 people, one demand: #FundLongCOVID.
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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 19/04/2026
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
media.tenor.com
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
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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 19/04/2026
☎️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
media.tenor.com
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
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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 19/04/2026
📣#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
A drawing of the U.S. Capitol with Long COVID Campaign logo above it, and Sign on, Senators to #FundLongCOVID underneath, with the message: Sunday Voicemails Plus Emails Equals Change.
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Meighan Stone @meighanstone.bsky.social · 11/08/2025
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
Photo of Dr. Peluso's closing slide from his Long COVID Keystone symposia opening presentation, "Toward A Global Long COVID Roadmap", showing the Long COVID Campaign logo and a quote from Long COVID Campaign executive director Meighan Stone: "Clinicians, researchers, non-profit partners, donors, regulators, patients, and advocates from around the world need to gather to develop a specific, time-bound 'Global Long COVID Roadmap', with funding goals, scientific goalposts, and a clear multi-year strategy." We need to plan for the long game.
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Meighan Stone @meighanstone.bsky.social · 11/08/2025
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.
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Meighan Stone @meighanstone.bsky.social · 01/05/2025
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
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Reposted by Meighan Stone
PhillyPhile215 @phillyphile215.bsky.social · 29/04/2025
“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...
nebraskapublicmedia.org
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.
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Meighan Stone @meighanstone.bsky.social · 28/04/2025
📣 #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
appropriations.senate.gov
Biomedical Research: Keeping America’s Edge in Innovation | United States Senate Committee on Appropriations
United States Senate Committee on Appropriations
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Meighan Stone @meighanstone.bsky.social · 02/04/2025
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.
Photo of main stage at today's @politico.com #POLITICOHealth Care Summit, with Politico White House Bureau Chief Dasha Burns interviewing Special Government Employee Calley Means, a senior advisor to HHS Secretary Kennedy.
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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 29/03/2025
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
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Meighan Stone @meighanstone.bsky.social · 29/03/2025
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
cen.acs.org
NIH restores some long COVID grants
Researchers still nervous about funding status
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Meighan Stone @meighanstone.bsky.social · 21/03/2025
📣#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.
A screenshot of the Office of Long COVID Research and Practice HHS web page from this afternoon on March 21, 2025, showing most of the previous content has been removed and replaced with a minimal list of resources.
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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 19/03/2025
🚨#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 🙏🏾🙏🙏🏽
media.tenor.com
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
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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 15/03/2025
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...
npr.org
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.
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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 12/03/2025
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...
npr.org
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.
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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/02/2025
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...
latimes.com
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?
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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 11/02/2025
#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.
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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 05/02/2025
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?
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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 03/02/2025
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-...
abcnews.go.com
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.
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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 29/01/2025
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*
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Meighan Stone @meighanstone.bsky.social · 29/01/2025
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...
washingtonpost.com
White House rescinds freeze on federal grants, in reversal
The reversal followed criticism of the sudden freeze by the White House budget office.
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Meighan Stone @meighanstone.bsky.social · 29/01/2025
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.
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Meighan Stone @meighanstone.bsky.social · 29/01/2025
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
Photo of HHS Secretary nominee Robert F. Kennedy Jr. entering a packed Finance Committee hearing room for first of two Senate confirmation hearings on Wednesday, January 29, 2025. Mr. Kennedy is surround by press and supporters with cameras.
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Reposted by Meighan Stone
Cindy L @cuboidalhug.bsky.social · 10/01/2025
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...
clinicaltrials.gov
ClinicalTrials.gov
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Meighan Stone @meighanstone.bsky.social · 27/01/2025
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🫠
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Meighan Stone @meighanstone.bsky.social · 15/01/2025
#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!
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Meighan Stone @meighanstone.bsky.social · 15/01/2025
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.
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Meighan Stone @meighanstone.bsky.social · 15/01/2025
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.
A screenshot of an unsolicited, offensive video sent to Meighan, who is a wheelchair user, with text on screen reading: "Women [sic] who has been paralyzed since birth gets up on her own in a church service in Brazil after feeling the presence of God"
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Reposted by Meighan Stone
Kristin Houlihan, Writer @kristinwrites.bsky.social · 03/01/2025
#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?
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Meighan Stone @meighanstone.bsky.social · 10/01/2025
#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
gofund.me
Donate to LA Wildfire Home Loss: Help the Shackett-Pola Family Rebuild, organized by Meighan Stone
Late today, the Shackett-Pola family received devastating new… Meighan Stone needs your support for LA Wildfire Home Loss: Help the Shackett-Pola Family Rebuild
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Meighan Stone @meighanstone.bsky.social · 30/12/2024
#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
The Long COVID Campaign logo in "Long COVID Awareness Teal" with tagline of "care, treat, now"
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Meighan Stone @meighanstone.bsky.social · 23/12/2024
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.
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Meighan Stone @meighanstone.bsky.social · 18/12/2024
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!
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Reposted by Meighan Stone
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 12/12/2024
📣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...
nih.gov
NIH adds funds to long COVID-19 research, advances work on new clinical trials
This brings the total new funding to $662 million.
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Meighan Stone @meighanstone.bsky.social · 12/12/2024
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...
njour.nl
Democrats, RFK Jr. could find common ground on chronic disease
Despite his controversial views on vaccines, some Democratic senators and patient advocates see areas of agreement when it comes to nutrition and chronic disease.
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Reposted by Meighan Stone
Julia Métraux @juliametraux.bsky.social · 29/11/2024
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.
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Meighan Stone @meighanstone.bsky.social · 26/11/2024
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.
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Meighan Stone @meighanstone.bsky.social · 26/11/2024
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...
npr.org
Long COVID patients push to see federal research refocused on treatments
The federal government has allocated $1.15 billion so far on long COVID research, without bringing any new treatments to market. Patients and scientists say it's time to push harder for breakthroughs.
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Meighan Stone @meighanstone.bsky.social · 24/11/2024
#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!
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Meighan Stone @meighanstone.bsky.social · 14/11/2024
[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
media.tenor.com
a microphone with the word check written on it
ALT: a microphone with the word check written on it
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