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

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

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.

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

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

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

“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...

📣 #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

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

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...

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

🚨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

US friends please call your reps 😭🙏 the only hope for saving these grants 🕯 bsky.app/profile/lcca...

🚨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...

🚨 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

Another action to support #LongCovid. This one includes a phone call kit. #NoLongCovidCuts!

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.

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!

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...

📣 #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

📣#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 🙏🏾🙏🙏🏽

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...

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...

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?

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-...

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.

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

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*

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."

Yale COVID Study: Over One-Third of People With COVID-19 Develop Long COVID. 30seconds.com/health/tip/8...

Thanks to everyone in #LongCOVID Community reaching out to make an end-of-year, tax-deductible donation to help us continue & expand our mission in 2025! If you feel able to chip in too, every donation counts. We have big plans—but can only achieve them with your support: tinyurl.com/LongCOVIDCam...

Thanks @npr.org @sarahboden.bsky.social for interviewing #LongCOVID patients & Long COVID Campaign on why additional NIH #RecoverTLC funds must prioritize launching robust clinical trials. 2025 research must directly focus on developing urgently needed tests & treatments. www.npr.org/2024/12/23/n...

Very solid @npr.org . H/T @lccampaign.bsky.social @meighanstone.bsky.social "Much of the NIH-funded research on long COVID has focused on observing and understanding the disease. Some patients and doctors say the research should pivot toward finding new treatments and drugs." tinyurl.com/5av6yfc6

Renowned cellist, composer & person living with #LongCOVID Joshua Roman hit The Hill with Long COVID Campaign last week to advocate for critical research funding & care. Thanks to Senators Marshall & Mullin & Chair Aderholt senior staff for meeting on #LongCOVID patient community needs & support.

📣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...

@nationaljournal.com @erincdurkin.bsky.social spoke to Long COVID Campaign on our Trump health nominee & Hill Republican outreach: “We’re hopeful as the new administration is coming in with a stated focus on chronic illness, this will be part of the work we can do together." njour.nl/s/727028?unl...

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...