Long COVID Campaign | www.longcovidcampaign.org
@lccampaign.bsky.social
Equitable, accessible & affordable treatment for all. The Long COVID Campaign advocates for accelerated research & expanded support programs in U.S. & globally.
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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
August 11, 2025 at 4:58 PM
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
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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
August 11, 2025 at 4:58 PM
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
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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
August 11, 2025 at 4:57 PM
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
Reposted by Long COVID Campaign | www.longcovidcampaign.org
@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
August 11, 2025 at 4:55 PM
@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
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
August 11, 2025 at 5:01 PM
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
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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.
August 11, 2025 at 3:16 PM
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
Was able to thank @pattymurray.bsky.social in person after the hearing. Equally grateful to Senator Collins for this bipartisan space to highlight the importance of biomedical research and of ensuring sufficient funding for it!
@lccampaign.bsky.social
@lccampaign.bsky.social
May 1, 2025 at 7:34 PM
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
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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
May 1, 2025 at 5:54 AM
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
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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
May 1, 2025 at 7:23 PM
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
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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
May 1, 2025 at 7:18 PM
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
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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
May 1, 2025 at 7:13 PM
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
Reposted by Long COVID Campaign | www.longcovidcampaign.org
“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...
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.
nebraskapublicmedia.org
April 29, 2025 at 7:14 PM
“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...
Reposted by Long COVID Campaign | www.longcovidcampaign.org
📣 #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
Biomedical Research: Keeping America’s Edge in Innovation | United States Senate Committee on Appropriations
United States Senate Committee on Appropriations
appropriations.senate.gov
April 28, 2025 at 5:20 PM
📣 #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
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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.
April 2, 2025 at 2:25 PM
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
🚨 BREAKING: #LongCOVID 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, according to patient representatives in the initiative. bit.ly/3FO8LuQ
March 29, 2025 at 2:13 AM
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
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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...
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...
thesicktimes.org
March 28, 2025 at 10:09 PM
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...
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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
NIH restores some long COVID grants
Researchers still nervous about funding status
cen.acs.org
March 29, 2025 at 2:02 AM
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
March 29, 2025 at 1:57 AM
🚨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
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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...
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...
March 27, 2025 at 9:01 PM
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...
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...
March 27, 2025 at 4:37 PM
🚨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...
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...
Reposted by Long COVID Campaign | www.longcovidcampaign.org
🚨 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
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
📣 #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
bit.ly/NoLongCOVIDCutsCall
March 27, 2025 at 12:25 AM
🚨 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
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
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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...
Can you make just3⃣ calls & send3⃣ emails to Congress today?
☎️Call Congress Tool☎️
bit.ly/NoLongCOVIDC...
📨 Email Congress Tool📨
bit.ly/NoLongCOVIDC...
March 27, 2025 at 12:30 AM
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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.
Please complete if spoons and time permits, it only took a few minutes to reach out. Thank you to all who have.
📣 #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
bit.ly/NoLongCOVIDCutsCall
March 26, 2025 at 5:55 PM
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.
Please complete if spoons and time permits, it only took a few minutes to reach out. Thank you to all who have.
Reposted by Long COVID Campaign | www.longcovidcampaign.org
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!
📣#LongCOVID COMMUNITY UPDATE📣 We now have Long COVID Campaign #NoLongCOVIDCuts email Congress tool up, along with auto-dialer call Congress tool:
📨Email Your Reps 📨
bit.ly/NoLongCOVIDC...
☎️Call your Reps ☎️
bit.ly/NoLongCOVIDC...
5/x
📨Email Your Reps 📨
bit.ly/NoLongCOVIDC...
☎️Call your Reps ☎️
bit.ly/NoLongCOVIDC...
5/x
March 26, 2025 at 7:47 PM
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...
Can you make just3⃣ calls & send3⃣ emails to Congress today?
☎️Call Congress Tool☎️
bit.ly/NoLongCOVIDC...
📨 Email Congress Tool📨
bit.ly/NoLongCOVIDC...
March 26, 2025 at 8:11 PM
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...
Can you make just3⃣ calls & send3⃣ emails to Congress today?
☎️Call Congress Tool☎️
bit.ly/NoLongCOVIDC...
📨 Email Congress Tool📨
bit.ly/NoLongCOVIDC...