iiinova — where your digital self keeps evolving

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 🥰

Reposted by Long COVID Campaign | www.longcovidcampaign.org

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

1195

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 22/04/2026

So every call made & email sent? Every other advocacy group that used & customized our free Senate call & email tools? Every person living with #LongCOVID, caregiver or loved one who pitched in & asked for what you need, however you wanted? A big THANK YOU. #WeCarryEachOther 9/9

172

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 22/04/2026

And here's the tough truth: When Senators don't hear from our community & their constituents living with #LongCOVID & associated conditions like #POTS #dysautonomia #MECFS at critical times like this? It becomes way too easy to simply FORGET us on funding & Appropriations. 8/x

media.tenor.com

a little girl is looking out of a window and making a funny face while saying `` do you remember me '' .

Alt: a little girl is looking out of a window and making a funny face while saying `` do you remember me '' .

182

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 22/04/2026

Bottom line on #LongCOVID advocacy OUR COMMUNITY just made happen: 🏆 We did A LOT, without much time to prep or plan! 🏆 YOU ensured support with senators who could sign on a #FundLongCOVID "Dear Colleague" letter! 🏆 ALL Senators you called & emailed tracked your outreach. 7/x

media.tenor.com

a bald man is making a funny face and says so many people

Alt: GIF of The Rock, taking note of "so many people" from our chronically ill and disabled community taking action over the last few days to fund Long COVID care and research

161

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 22/04/2026

Additionally, Appropriations Labor-HHS subcommittee chair Senator Capito & ranking member @baldwin.senate.gov, as well as overall Appropriations committee chair Senator Collins & ranking member @murray.senate.gov don't sign either, due to decorum, as such letters are addressed to them. 6/x

160

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 22/04/2026

Don't see your senator signed? Some KEY Senate background: for nearly all Approps "Dear Colleague" letters, sign-ons skew heavily Dem & most Senate Republicans pass (as to not appear endorsing higher spending). But every office tracks them closely. Not signing isn't ignoring! 5/x

150

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 22/04/2026

Here's the final @markey.senate.gov @kaine.senate.gov @duckworth.senate.gov “Dear Colleague" letter with signatures of senators who signed on to support FY27 funding for interventional drug trials & biomarker research & care for #LongCOVID & associated conditions like #POTS #Dysautonomia #MECFS 2/x

182

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

More details about this advocacy campaign can be found here /end bsky.app/profile/lcca...

020

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.

192

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

152

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

152

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.org

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

1146

Reposted by Long COVID Campaign | www.longcovidcampaign.org

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

163

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026

More details about this campaign can be found below /end bsky.app/profile/lcca...

041

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026

163

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026

1146

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026

And these senators have signed on to the #FundLongCOVID letter as well @warren.senate.gov, @welch.senate.gov, & @whitehouse.senate.gov All thanks to your incredible advocacy 👏👏👏3/x

1113

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.org

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

045

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026

If you're outside the U.S., please share this thread & tag community members/allies so that we get the farthest reach. EVERY CALL matters--regardless of which state someone is in! We need to let Congress know WE ARE STILL HERE and need to #FundLongCOVID in 2027. /end

041

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026

Calls make the biggest impact...but if you require email, here is a tool that allows you to email✉️ your Senators with the same ask to your two Senators tinyurl.com/LongCOVIDEmail asking them to sign on to the Dear Colleague Letter and #FundLongCOVID in 2027 Appropriations. 7/x

132

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026

The letter also directs NIH to focus on drug trials, biomarkers, diagnostics, & therapeutics AND to examine/target common LC-related conditions such as dysautonomia, #POTS, & #MEcfs in research that is funded. 6/x

151

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026

@markey.senate.gov (D-MA), @kaine.senate.gov (D-VA), @duckworth.senate.gov (D-IL) are championing this FY27 "Dear Colleague" letter calling for for $10 million to AHRQ #LongCOVID care Centers of Excellence and $200m to the NIH for LC research. 5/x

141

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026

Asking your Senators to sign #FundLongCOVID "Dear Colleague" letter is one of most important ways to ask for care & research funding for FY27. While at the same time, we keep up calling for a multi-year authorizing #LongCOVID bill (ie The Ryan White CARE Act for HIV/AIDS) 4/x

124

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026

As part of "Approps" process, Senators send each other "Dear Colleague" letters to sign on to, which then submitted to relevant Approps committees, asking for that funding & "report language" for the Approps bills that guides spending & accountability for next fiscal year. 3/x

121

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 17/04/2026

Funding #LongCOVID is a multiple-front fight! As we continue to call for multiyear "authorizing legislation"—a big Long COVID bill—we also must work each year on "Appropriations" or annual funds the US govt spends. The Friday deadline is for Fiscal Year 2027 or "FY27" 2/x

131

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

22413

Reposted by Long COVID Campaign | www.longcovidcampaign.org

Michael Sieverts @yogafogie.bsky.social · 14/04/2026

Kudos to @lccampaign.bsky.social for bringing the patient voice!

042

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 16/04/2026

Why This Campaign Matters 21M+ Americans are living with #LongCOVID — and, right now, there's a critical window to fight for the funding they desperately need. Help us send a powerful message to the Senate that we are still here and we need help NOW. #FundLongCOVID /end

1148

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 16/04/2026

The Senate letter centers patient needs: 1) monies are directed to drug trials, biomarkers, & therapeutics AND 2) LC-related conditions like dysautonomia, POTS, & ME/cfs will be included in research. Let’s remind leaders that THESE are the interventions we want and need. 8/X

A screenshot of language from the FY “Dear Colleague” letter which says: “Research on Long COVID. The Committee remains concerned about the lack of FDA-approved diagnostics and treatments for the estimated 1 in 19 Americans living with Long COVID. To accelerate the NIH’s initial clinical trials on Long COVID, the Committee provides not less than $200,000,000 for new Long COVID research. With these funds, the Committee directs NIH to focus on interventional drug trials, biomarker discovery, and the development of diagnostic tests and therapeutics. Such research should also examine and target conditions commonly associated with Long COVID, including dysautonomia, postural orthostatic tachycardia syndrome (POTS), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The Committee further directs NIH to brief the Committee not later than 180 days after enactment detailing the agency’s progress, including projected timelines and barriers to research progress.” The part that says “directs NIH to focus on interventional drug trials, biomarker discovery, and the development of diagnostic tests and therapeutics” and “including dysautonomia, postural orthostatic tachycardia syndrome (POTS), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)” is highlighted.

1117

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 16/04/2026

If you have additional spoons OR are outside the U.S.… you can also post on socials, tag, & thank Senators Markey (D-MA) @markey.senate.gov, Kaine (D-VA) @kaine.senate.gov, Duckworth (D-IL) @duckworth.senate.gov, & Young (R-IN) for their continued support of the #LongCOVID community. 7/x

Stock photo showing the words “Thank you” in the middle with a sprig of leaves on the bottom right corner

174

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 16/04/2026

3. 📢 Share this thread and these tools with friends, family, and fellow advocates so they too can use them advocate to #FundLongCOVID. Tag those you especially think may want to see it so the algorithm doesn’t prevent views. 6/x

164

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 16/04/2026

2. ✉️ Email your Senators with the same ask using this handy LCC email tool tinyurl.com/LongCOVIDEmail which provides an email template & sends directly to your 2 Senators asking them to sign on to the Dear Colleague Letter and #FundLongCOVID in 2027 Appropriations. 5/x

tinyurl.com

New/Mode | Make your voice impossible to ignore

187

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 16/04/2026

#pwLC #POTS #pwME #NEISVoid in the U.S. – Here are THREE WAYS You can help 1. 📞 Calls to Senators' offices make a BIG impact & this handy LCC call tool automatically identifies your 2 senators based on address tinyurl.com/LongCOVIDCall Letter deadline is COB Friday April 17th 4/x

tinyurl.com

New/Mode | Make your voice impossible to ignore

1105

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 16/04/2026

BUT we need more Senators to sign on to the FY 27 “Dear Colleague” appropriations letter. ANY of the 100 U.S. Senators can support this request. EVERY U.S. patient can call or email their Senators to highlight the need to #FundLongCOVID in 2027 appropriations. 3/x

Map of the United States showing the political affiliation of the 100 Senators found here https://us.onair.cc/files/2023/12/map-of-us-senators.jpg

184

Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 16/04/2026

Senators Markey @markey.senate.gov, Kaine @kaine.senate.gov, and Duckworth @duckworth.senate.gov are once again championing a FY27 "Dear Colleague" letter calling for over $210 MILLION in appropriations for research funding at NIH, ARPA-H, and AHRQ clinics #LongCOVID & related conditions. 2/X

Stock photo of a person wearing rubber gloves and a labcoat looking at something under a microscope

2189

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.org

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

082

Reposted by Long COVID Campaign | www.longcovidcampaign.org

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

171

Reposted by Long COVID Campaign | www.longcovidcampaign.org

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

141

Reposted by Long COVID Campaign | www.longcovidcampaign.org

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

141

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

075

Reposted by Long COVID Campaign | www.longcovidcampaign.org

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.

0123

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

194