Reposted by Long COVID Campaign | www.longcovidcampaign.orgRazzle dazzle @rozzledozzle.bsky.social · 22/04/2026Thank you, @wyden.senate.gov !! So grateful to have senators I call to thank 🥰 021
Reposted by Long COVID Campaign | www.longcovidcampaign.orgC.H. Romatowski @chromatowski.bsky.social · 22/04/2026This 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 1195
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 22910
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 13317
Reposted by Long COVID Campaign | www.longcovidcampaign.orgLong 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 1146
Reposted by Long COVID Campaign | www.longcovidcampaign.orgLong COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026Links 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 163
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 22819
Reposted by Long COVID Campaign | www.longcovidcampaign.orgChristophe Veltsos @drinfosec.bsky.social · 17/04/2026Great news!!! See image 👇 Full 🧵 with list of senators on board: threadreaderapp.com/thread/20452... 045
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.👇 22413
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMichael Sieverts @yogafogie.bsky.social · 14/04/2026Kudos to @lccampaign.bsky.social for bringing the patient voice! 042
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?🧵 44431
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMeighan Stone @meighanstone.bsky.social · 11/08/2025Again, 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. 5/5 082
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMeighan Stone @meighanstone.bsky.social · 11/08/2025One 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 171
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMeighan Stone @meighanstone.bsky.social · 11/08/2025As @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 141
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMeighan 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 141
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 11/08/2025We 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 075
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMeighan Stone @meighanstone.bsky.social · 11/08/2025A 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. 0113
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 01/05/2025Look, 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 194
Reposted by Long COVID Campaign | www.longcovidcampaign.orgerubie.bsky.social @erubie.bsky.social · 01/05/2025EDS/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 2339
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMeighan Stone @meighanstone.bsky.social · 01/05/2025I 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 0166
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMeighan Stone @meighanstone.bsky.social · 01/05/2025BlueSky 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 1123
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMeighan Stone @meighanstone.bsky.social · 01/05/2025If 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 3197
Reposted by Long COVID Campaign | www.longcovidcampaign.orgPhillyPhile215 @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.orgLong-COVID research funding was pulled, then brought back. Patients say the research is vitalFunding 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. 0157
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMeighan 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/xappropriations.senate.govBiomedical Research: Keeping America’s Edge in Innovation | United States Senate Committee on AppropriationsUnited States Senate Committee on Appropriations 195
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMeighan Stone @meighanstone.bsky.social · 02/04/2025Thank 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. 012
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 29/03/2025Thanks @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 0249
Reposted by Long COVID Campaign | www.longcovidcampaign.orgUsha Lee McFarling @usha.bsky.social · 28/03/2025Big 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.orgUPDATE: RECOVER Long COVID pathobiology grants restored - The Sick TimesLong 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... 313857
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMeighan Stone @meighanstone.bsky.social · 29/03/2025Thanks @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/xcen.acs.orgNIH restores some long COVID grantsResearchers still nervous about funding status 132
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 0164
Reposted by Long COVID Campaign | www.longcovidcampaign.orgelisa @mildtin.bsky.social · 27/03/2025US friends please call your reps 😭🙏 the only hope for saving these grants 🕯 bsky.app/profile/lcca... 1124
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... 23617
Reposted by Long COVID Campaign | www.longcovidcampaign.orgRiemerville @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 32315
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMEActMaryland @meactmaryland.bsky.social · 27/03/2025Another action to support #LongCovid. This one includes a phone call kit. #NoLongCovidCuts! 165
Reposted by Long COVID Campaign | www.longcovidcampaign.orgBilly Hanlon @bhanlon15.bsky.social · 26/03/2025TY @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. 082
Reposted by Long COVID Campaign | www.longcovidcampaign.orgclairifur.bsky.social @clairifur.bsky.social · 26/03/2025I'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! 163
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 26/03/2025The 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... 01813
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 1158
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMeighan 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. 185
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.coma sign that says graphic is design my passionAlt: A terrible GIF with words "Graphic Design is My Passion" in ironically mismatched fonts, colors and treatments 043
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 15/03/2025Still 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.org5 years since the pandemic started, long COVID patients are still hoping for a cureThey're pushing for more funding to find effective treatments. Researchers are finally starting to make headway but have a way to go. 0248
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 12/03/2025ICYMI @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.orgScientists are making progress in better understanding Long COVIDScientists have made progress in understanding Long COVID over the last five years. Patient advocates hope that research will continue under the Trump administration. 011
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/02/2025MUST-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.comOpinion: Long COVID is solvable, but we need more clinical trialsSome 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? 0137
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. 001
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 05/02/2025Are 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? 122
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 03/02/2025ABC 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.comLong COVID impacting more than 1 million children: CDC study suggestsA 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. 098
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 30/01/2025The 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. 230
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 29/01/2025From 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) 1/3 231
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 29/01/2025Thanks 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* 183
Reposted by Long COVID Campaign | www.longcovidcampaign.orgMichael Sieverts @yogafogie.bsky.social · 22/01/2025H/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." 1113
Reposted by Long COVID Campaign | www.longcovidcampaign.orgData Report @datareport.bsky.social · 15/01/2025Yale COVID Study: Over One-Third of People With COVID-19 Develop Long COVID. 30seconds.com/health/tip/8...30seconds.comYale COVID Study: Over One-Third of People With COVID-19 Develop Long COVID | Family Health | 30Seconds HealthA 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... 89846