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Long COVID Campaign | www.longcovidcampaign.org

@lccampaign.bsky.social
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Equitable, accessible & affordable treatment for all. The Long COVID Campaign advocates for accelerated research & expanded support programs in U.S. & globally.

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Reposted by Long COVID Campaign | www.longcovidcampaign.org
Razzle dazzle @rozzledozzle.bsky.social · 22/04/2026
Thank you, @wyden.senate.gov !! So grateful to have senators I call to thank 🥰
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C.H. Romatowski @chromatowski.bsky.social · 22/04/2026
This is a great outcome, and also a great thread with some education on the strategy here! 🧵 Thank you so much to everyone who called! #LongCovid #NEISvoid #MECFS #POTS
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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 22/04/2026
📣 #LongCOVID Community 📣 Thank you to EVERYONE who took action over the last few days! Your phone calls & emails resulted in 14 senators signing on to the FY27 #FundLongCOVID Dear Colleague letter to Senate appropriators for over $210 million in care & research funding! 1/x
A drawing of the U.S. Capitol building, with the teal Long COVID Campaign logo above it, with message of: Thank you for taking action! 14 Senators signed on to $210 million plus FY27 Dear Colleague Letter to Fund Long COVID
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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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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026
📣📣📣with the deadline extended to Monday, let's keep the emails & calls going! These Senators signed the FY26 #FundLongCOVID letter last year, but haven't yet this year: @kirstengillibrand.bsky.social, @kim.senate.gov , @warnock.senate.gov, @wyden.senate.gov Let's try & grow the list for FY27! 4/x
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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026
Links again for our free, customizable @lccampaign.bsky.social tools to ask YOUR SENATORS to sign-on to the $210+ million #FundLongCOVID FY27 Appropriations letter: 📞 #FundLongCOVID Senate call tool: tinyurl.com/LongCOVIDCall ☎️ #FundLongCOVID Senate email tool: tinyurl.com/LongCOVIDEmail 5/x
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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026
📣GREAT NEWS📣 Just spoke to Hill champions: your hundreds of calls & emails are making such a difference, they've extended deadline for Senator sign-on to #FundLongCOVID Dear Colleague letter to MONDAY APRIL 20 10am ET! More @lccampaign.bsky.social details incoming, senators now signed: 1/x
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Christophe Veltsos @drinfosec.bsky.social · 17/04/2026
Great news!!! See image 👇 Full 🧵 with list of senators on board: threadreaderapp.com/thread/20452...
📣GREAT NEWS📣 Just spoke to Hill champions: your hundreds of calls & emails are making such a difference, they've extended deadline for Senator sign-on to #FundLongCOVID Dear Colleague letter to MONDAY APRIL 20 10am ET! More @LCCampaign details incoming, senators now signed: 1/x
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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026
🚨📞CALLS needed TODAY! Final push to get Senators to sign on to $210M to fund LC & related conditions in FY27 budget appropriations. This call tool routes to Senators with a script: tinyurl.com/LongCOVIDCall Leave a msg., if needed. More in 🧵on this #FundLongCOVID campaign.👇
Drawn image of the U.S. Capitol dome, with the words underneath: Long COVID patients have waited too long for TESTS, TRIALS & TREATMENTS. #FundLongCOVID
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Michael Sieverts @yogafogie.bsky.social · 14/04/2026
Kudos to @lccampaign.bsky.social for bringing the patient voice!
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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 16/04/2026
📣U.S. Action Item: #pwLC #POTS #pwME #NEISVoid we need your help! Will you contact your Senators & ask them to sign on to the FY27 Senate “Dear Colleague” Letter for over $210 million to #FundLongCOVID in 2027 Appropriations using our EASY low-spoons call/email tool?🧵
Drawn image of the U.S. Capitol dome, with the words underneath: Long COVID patients have waited too long for TESTS, TRIALS & TREATMENTS. #FundLongCOVID
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Meighan Stone @meighanstone.bsky.social · 11/08/2025
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
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Meighan Stone @meighanstone.bsky.social · 11/08/2025
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
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Meighan Stone @meighanstone.bsky.social · 11/08/2025
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
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Meighan Stone @meighanstone.bsky.social · 11/08/2025
@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
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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 11/08/2025
We need a #GlobalLongCOVIDRoadmap. No global health concern—from malaria to TB, HIV/AIDS to polio—has successfully mobilized research funding, accessible treatment or achieved scientific breakthroughs at the scale & pace needed without an international effort. #Keystone
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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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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 01/05/2025
Look, when our @erubie.bsky.social‬ is in the room, senators are going to know the Long COVID community was present & is asking for their support! Thanks for jumping in yesterday, flying the flag & being such a key part of our Long COVID Campaign team. #disabledwomenFTW
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erubie.bsky.social @erubie.bsky.social · 01/05/2025
EDS/HSD Awareness Month Day 1: Starting things off by resharing a picture from yesterday, when I had the opportunity to represent @lccampaign.bsky.social & join LC advocates in attending Senator Collins & @murray.senate.gov's bipartisan appropriations hearing on biomedical research. 1/x
A selfie of seven Long COVID advocates sitting in a row in a U.S. Senate hearing room. They are all wearing masks and Long COVID teal shirts.
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Meighan Stone @meighanstone.bsky.social · 01/05/2025
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
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Meighan Stone @meighanstone.bsky.social · 01/05/2025
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
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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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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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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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Usha Lee McFarling @usha.bsky.social · 28/03/2025
Big win for the Long Covid community -- grants restored. Also hearing other cancelled biomedical grants are getting restored. Maybe raising a ruckus works? Via @thesicktimes.bsky.social @betsyladyzhets.bsky.social thesicktimes.org/2025/03/28/u...
thesicktimes.org
UPDATE: RECOVER Long COVID pathobiology grants restored - The Sick Times
Long COVID 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, accord...
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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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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 29/03/2025
🚨THANK YOU #LONGCOVID PATIENT COMMUNITY 🚨 Because of you, NIH RECOVER grant terminations being reversed & restored! This win was only possible due to YOUR advocacy & support from our Hill bipartisan champions! THANK YOU to every person who called, emailed & took action! #NoLongCOVIDCuts
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elisa @mildtin.bsky.social · 27/03/2025
US friends please call your reps 😭🙏 the only hope for saving these grants 🕯 bsky.app/profile/lcca...
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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 27/03/2025
🚨BREAKING: NIH RECOVER #LongCOVID GRANT CUTS HAVE STARTED🚨 The next 2⃣ DAYS critical to tell Congress #NoLongCOVIDCuts to clinical trials & clinic funding. Can you make just 3⃣ calls & send 3⃣emails today? ☎️Call Congress Tool bit.ly/NoLongCOVIDC... 📨Email Congress Tool bit.ly/NoLongCOVIDC...
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Riemerville @riemerville.bsky.social · 27/03/2025
🚨 Long Covid funding is at risk! 🚨 Nobody is safe,Long Covid doesn’t discriminate.It could happen to you or someone you love. Please take 2 minutes to call your rep.& demand they keep Long Covid research funded. 📞 Call now: win.newmode.net/longcovidcam... #LongCovid #NoLongCovidCuts
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MEActMaryland @meactmaryland.bsky.social · 27/03/2025
Another action to support #LongCovid. This one includes a phone call kit. #NoLongCovidCuts!
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Billy Hanlon @bhanlon15.bsky.social · 26/03/2025
TY @smith.senate.gov for already responding to my outreach & message this morning expressing concern following yesterday's announcement. Please complete if spoons and time permits, it only took a few minutes to reach out. Thank you to all who have.
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clairifur.bsky.social @clairifur.bsky.social · 26/03/2025
I've called all my city and state reps to say #NoNYMaskBan, so now I am calling my congressional reps to say #NoLongCOVIDCuts. @lccampaign.bsky.social has made it really accessible to do so with the tools below. You don't even have to speak to someone if that's not your thing!
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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 26/03/2025
The next 3⃣ DAYS are critical to ensuring #NoLongCOVIDCuts to U.S. government #LongCOVID clinical trials & clinic funding. Can you make just3⃣ calls & send3⃣ emails to Congress today? ☎️Call Congress Tool☎️ bit.ly/NoLongCOVIDC... 📨 Email Congress Tool📨 bit.ly/NoLongCOVIDC...
Image of teal, positive-sign Long COVID Campaign logo overlayed on the U.S. Capitol building of Congress with text: "Action Alert: Long COVID funding at risk, action incoming"
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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 25/03/2025
📣 #LongCOVID Community: With recent news, we're now hearing NIH RECOVER-TLC research & AHRQ Long COVID clinic funding could also be at risk. So LCC is launching a rapid-response campaign NOW to make it easier to call Congress & ask for #NoLongCOVIDCuts 1/x bit.ly/NoLongCOVIDCutsCall
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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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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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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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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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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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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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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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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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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 30/01/2025
The second confirmation #RFKJrHearing with Senate HELP Committee has concluded, with no additional #LongCOVID questions today. It appears confirmation could rest on outcome of new Senate HELP Chair Cassidy's (R-LA) conversation with Mr. Kennedy this weekend, as per the Chair's closing remarks.
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Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 29/01/2025
From today's #HHS #RFKJrHearing, transcript of the three #LongCOVID questions & answers between Sen. Todd Young (R-IN) & Mr. Kennedy: Q1 (alt text contains word-for-word transcript) 1/3
Senator Young: With respect to COVID, it’s not over for a lot of Americans. I know the mission accomplished banner was convenient for the last administration, but as we continue to navigate the ongoing impacts of the COVID pandemic, we have many individuals in the US and around the world who are suffering from long-term health effects that significantly impact their quality of life, work, their daily activities, and they’ve been largely ignored. Long COVID research was appropriated by Congress in December of 2020 followed by additional funding by the Biden Administration in February 2024. Patient groups and industry publications have criticized the slow pace of clinical trial design and enrollment. If confirmed, will you collaborate with researchers and impacted communities to better understand and mitigate long COVID’s impact?

Mr. Kennedy: Absolutely, there’s sixteen million Americans.
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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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Michael Sieverts @yogafogie.bsky.social · 22/01/2025
H/T @crankyqueer.org @lccampaign.bsky.social "Despite #LongCOVID ’s vast reach, the federal government’s investment in researching the disease — to the tune of $1.15 billion as of December — has so far failed to bring any new treatments to market."
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Data Report @datareport.bsky.social · 15/01/2025
Yale COVID Study: Over One-Third of People With COVID-19 Develop Long COVID. 30seconds.com/health/tip/8...
30seconds.com
Yale COVID Study: Over One-Third of People With COVID-19 Develop Long COVID | Family Health | 30Seconds Health
A meta-analysis of 429 studies published from 2021 to 2024 estimated a pooled global long COVID prevalence of 35 percent in COVID-19 positive individuals. The findings, titled Global Prevalence of Lon...
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