Meighan Stone

Again, deep gratitude to @michaelpelusomd.bsky.social for your constant research for & engagement with the patient community. To donors: this is a critical moment to sustain & grow #LongCOVID advocacy. Let's help patient advocates move from bootstrapping to global collaboration at scale. 5/5

One government & a handful of donors won't solve #LongCOVID. From EU to Gulf States donors, UN to G20, multilateral funds to traditional global health foundations who haven't yet come to the table—our Long COVID advocacy must be a GLOBAL call for GLOBAL strategy & solution. 4/x

As @michaelpelusomd.bsky.social shared: "We need to plan for the long game." @lccampaign.bsky.social believes #LongCOVID advocacy must now organize to GO GLOBAL—as otherwise work will continue to be delayed & diffused, when need acceleration & efficiency to best serve ALL patients & communities. 3/x

@lccampaign.bsky.social call to action: "Clinicians, researchers, nonprofit partners, donors, regulators, patients & advocates around the world need to gather to develop a specific, time-bound 'Global Long COVID Roadmap', w/funding goals, scientific goalposts & clear multi-year strategy" 2/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.

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.

I wanted to break down yesterday's Senate Appropriations medical research hearing & why matters to so many of us individually & as a community. And most importantly, the opening to work with bipartisan Hill leaders on #LongCOVID research funding. Let's decide to keep contending for all of us. 3/3

BlueSky still only allows short videos, so had to cut into 3 chunks & generate new caption files for accessibility for each video, so took more spoons than I had yesterday after being on The Hill! I know many folks in our community not on Twitter, so wanted to share some encouragement here too. 2/x

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

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.

“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...

As ever, we're at the ready at @lccampaign.bsky.social to answer any questions, lend support, or be your accommodations pit crew to help make attending this Senate hearing possible if you're based in greater Washington DC area or nearby! Feel free to email us: info@longcovidcampaign.org ♿️ 5/5

If you want to have your experience as a #LongCOVID patient included, but aren't in DC area: you can contact your U.S. Senators to share a statement for the record before this Wednesday. Any statements have to be submitted to the Senate Approps Committee by a Senate office! 4/x

As this Wednesday's Senate hearing isn't focused on #LongCOVID, but is still a critical moment to be present as a patient community at one of the first bipartisan Appropriations hearings on U.S. medical research funding, we encourage those in local DC area to consider attending! 3/x

Patients are organizing to attend this bipartisan Senate hearing together to ensure #LongCOVID community needs continue to be front & center! @lccampaign.bsky.social can provide a "Long COVID teal" tshirt (or wear you own) & advocacy stipends for any LOCAL transport / accessibility needs 2/x

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

📣 #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

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.

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

NIH restores some long COVID grants Researchers still nervous about funding status

[cont'd] "HHS Sec. Kennedy & NIH Director Bhattacharya action today on RECOVER research funding will make a powerful difference for the over 17 million Americans with Long COVID, especially pediatric patients.” cen.acs.org/policy/resea... 2/2

NIH restores some long COVID grants Researchers still nervous about funding status

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

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.

📣#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 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

🚨#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 🙏🏾🙏🙏🏽

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.

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...

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.

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...

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?

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?

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.

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*

White House rescinds freeze on federal grants, in reversal The reversal followed criticism of the sudden freeze by the White House budget office.

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.