Long COVID Justice
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longcovidjustice.org
Long COVID Justice
@longcovidjustice.org
4.9K followers 1.1K following 440 posts
We are leading grassroots efforts to confront the Long COVID crisis, while centering racial, social, economic & disability justice. Our work is done by and for chronically ill & disabled people, our families and communities. linktr.ee/longcovidjustice
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longcovidjustice.org
Quick vaccine update: Appointments are now available at some locations in the U.S. — check Vax Assist for pharmacies in your area: vaxassist.com/find-covid/schedule
Graphic image with green and aqua gradient background and illustrations of two purple hands holding protest signs. One sign says “vaccines are collective care” and the other says “vaccines should be FREE + ACCESSIBLE to EVERYONE.” Below this, a black text box has green text that says: “Find 2026-27 COVID vaccines.” An additional purple/yellow gradient text circle has black text that says: “vaxassist.com/find-covid/schedule. Pre-book now or check back for updates.”
September 3, 2026 at 6:25 PM
Reposted by Long COVID Justice
thesicktimes.org
New study: more evidence of alterations associated with Alzheimer’s disease in people with Long COVID

NIH recently launched the second phase of their adult observational study within RECOVER

Veteran Affairs is leading a potentially harmful trial of dieting and exercise for LC

shorturl.at/d5mco
An up close view of MRI image of a human brain is displayed on a monitor. A computer arrow navigates over the middle of the image. The text reads, “The Sick Times. Long COVID research updates. A new study found more evidence of alterations associated with Alzheimer’s disease in people with Long COVID. NIH recently launched the second phase of their adult observational study within RECOVER. Veteran Affairs Office of Research and Development is leading a potentially harmful behavioral trial of dieting and exercise for Long COVID.” A new study found more evidence of alterations associated with Alzheimer’s disease in people with Long COVID. Notably, scientists identified a larger choroid plexus, a region of blood vessels in the brain, as well as reduced cerebral blood flow. Other recent studies have found alterations in cerebral blood flow in Long COVID. The study compared people with Long COVID and people who “recovered” after COVID-19 to controls. Even those “recovered” had similar reduced cerebral blood flow to people with Long COVID. “These alterations were associated with sleep disturbances, cognitive impairment, and plasma biomarkers of [Alzheimer’s disease], suggesting a potential link to future dementia risk,” the authors concluded, stating that MRI imaging may serve as a marker of neurological symptoms of Long COVID. The National Institutes of Health (NIH) recently launched the second phase of their adult observational study within RECOVER, the flagship Long COVID research program. The survey study will include 5,000 people with Long COVID and controls from the first cohort of 15,000 people, with improvements to “help reduce burden” for participants over the next two years. Participants will also contribute biosamples including blood and saliva and undergo other tests. Funding for this second phase of observational studies was announced in December 2024. Despite extensive research showing Long COVID is not deconditioning and is a biological disease, the Veteran Affairs Office of Research and Development is leading a potentially harmful behavioral trial of dieting and exercise for Long COVID. The study aims to recruit 150 Veterans up to age 80 who will undergo weekly workout and nutrition classes for twelve weeks, comparing them to “weight stability” participants who will undergo stretching and “education” classes. Post-exertional malaise impacts many people with Long COVID and can worsen with exercise; but the trial’s description on clinicaltrials.gov does not mention PEM.
June 11, 2026 at 4:32 PM
longcovidjustice.org
Today is HIV Long-Term Survivors Awareness Day, and we’re honoring the wisdom of our illders. In this clip you’ll hear from Tori Cooper & Sylvester Askins, Jr. on what’s working to support our long-term HIV survivors. #HLTSAD
June 5, 2026 at 6:31 PM
Reposted by Long COVID Justice
thesicktimes.org
Patients have an expectation that when they visit a healthcare setting, they will leave in better shape than when they came in. However, many people end up with healthcare-associated infections. bit.ly/4eRAz0B
Protestors stand outside a brick building during a DoNoHarm BC action. They all wear high quality masks and hold bright signs demanding hospitals prevent airborne of pathogens with masking and other clean air interventions. One reads, “Hospitals should be safe” The text reads, “The We need masks in healthcare. Now. By Tesla Bellina-Gustafson.” It would be ridiculous if I needed to bring my own hand soap to an appointment and remind my doctors to wash their hands before a physical examination, and yet it has become my responsibility to manage my medical care [by bringing N95s with me to medical appointments]. - Tesla Bellina-Gustafson We need masks in healthcare. Now.
April 29, 2026 at 1:58 PM
longcovidjustice.org
Join us on May 6 to hear from powerful organizers like Tracey Thompson, founder of BIRCH: Black Indigenous Racialized Covid Health.

Tracey was a participant in our Long COVID oral history project - join us for the launch event next week!

Learn more & register: longcovidjustice.org/lflh-launch
Background is a yellow, blue, purple gradient. Large black text says: ““If you are a ‘Rest as Resistance’ girly I’m here to tell you that Long Covid steals rest. There is no respite, no refreshment, no possibility of rebirth. There is sometimes sleep, there is collapse, there is cellular exhaustion but no rest. There is no resistance without a mask. - Tracey Thompson” In the lower right corner is a large image of Tracey. Additional text says: “Listening for the Long Haul, May 6, Zoom. Below this are logos for History Moves and Long COVID Justice.
April 28, 2026 at 7:48 PM
Reposted by Long COVID Justice
emilyesfraser.bsky.social
Please call or email your Senators by close of business Friday 4/17 & ask them to sign on to the “Dear Colleague” letter for Long Covid funding:

Call tool: win.newmode.net/longcovidcam...

Email tool:
win.newmode.net/longcovidcam...
April 16, 2026 at 4:40 PM
Reposted by Long COVID Justice
sesmith.lol
Cool cool so you have to meet means testing to retain your Medicaid coverage, but offices are understaffed so the people who administer that means testing are hopelessly behind.
States Face Another Challenge With Medicaid Work Rules: Staffing Shortages - KFF Health News
Some states already don’t have enough staff to quickly process Medicaid applications and answer enrollees’ phone calls. Researchers say they may not be prepared to handle new Medicaid work rules, pred...
kffhealthnews.org
April 10, 2026 at 6:50 PM
longcovidjustice.org
Join us on May 6 to celebrate the launch of Listening for the Long Haul, our new Long COVID oral history website!

WEDS MAY 6
4:30-6:00pm ET
Zoom
Register: tiny.cc/lflh-launch
Graphic image with gradient background in tones of green, blue and purple. A black quote bubble has yellow text that says “new Long COVID oral history website: Listening for the Long Haul.” Additional black text says: “Launch event featuring: Chimére L. Sweeney, Jacquie Luciano, Tracey Thompson, Una Osato. Plus project organizers: Jennie Brier, Kaimara Herron, Gabriel San Emeterio.” To the right, another black quote bubble with yellow text says: “WEDS MAY 6, 4:30-6pm ET, zoom.” Additional yellow text in a black bubble says: “ REGISTER: tiny.cc/lflh-launch.” In the lower right corner are the logos for Long COVID Justice and History Moves.
April 10, 2026 at 6:50 PM
longcovidjustice.org
This #LongCOVIDAwarenessMonth, we’re excited to announce that our new oral history website is live! Featuring 100+ hours of interviews of people living with #LongCOVID.

We’re building a living history of Long COVID, and bringing voices from the margins to the center.

ListeningForTheLongHaul.org
Background is aqua and purple gradient. Large gradient text across the top says: "Listening for the Long Haul, a new website documenting Long COVID oral history." Below this is a set of illustrations including a bird flying, a window, a face mask, a microphone, a person lying in bed with headphones, a person tucked under blankets with a food bowl and laptop, a radio, an armchair, and a sound wavelength. Along the bottom edge are logos for Long COVID Justice and History Moves.
March 13, 2026 at 5:11 PM
longcovidjustice.org
Have you tried "off-label" meds for Long COVID and associated conditions (LCAC)?

Learn more in this resource from our Long COVID Essentials series, created in partnership w/
@thesicktimes.org: longcovidjustice.org/off-label-meds
Background is purple and aqua gradient. Large blue text says: “Using existing medications off-label for Long COVID.” Below this are 4 purple circles with illustrations of brightly colored pills and capsules, a person receiving a vagus nerve stimulus treatment, a syringe, and an oxygen molecule. The footer reads, "Long COVID Essentials, tiny.cc/LCE. A series by The Sick Times x Long COVID Justice."
March 5, 2026 at 6:39 PM
Reposted by Long COVID Justice
justicejoyandjill.bsky.social
March is Long Covid Awareness Month and I got enamel ribbon pins made!

Purchase here to support:
www.ebay.com/itm/36623394...

Wear on your mask, backpack, or shirt 🩵🩶🖤

@c19lap.bsky.social
@longcovidkids.bsky.social
@longcovidadvoc.com
@longcovidjustice.org
@longcovidsupport.bsky.social
Enamel ribbon shaped pin in teal, gray, and black with white writing "LONG COVID" The three colors in the ribbon represent: past present and future of Long Covid Gray: Loss and Grief Teal: Hope and Support Black: Loneliness and Isolation International Long Covid Awareness Day: March 15th International Long Covid Awareness Month: March
March 2, 2026 at 1:59 AM
longcovidjustice.org
Thanks everyone who supported this campaign! Shout out to @cleanairla.bsky.social for spearheading these efforts 💜
bdlimm.myatproto.social Bright D Limm 임대중 @bdlimm.myatproto.social · Feb 26
#ShareGoodNewsToo: Los Angeles will recognize Long Covid Awareness Day (Mar 15). City Hall will be the color teal around the time of the Academy Awards!

🙏 to the orgs leading the effort, incl.
@cleanairla.bsky.social, @togetherwemask.bsky.social, @longcovidjustice.org, and @patientled.bsky.social.
thesicktimes.org The Sick Times @thesicktimes.org · Feb 26
The city council of Los Angeles passed a resolution to recognize Long COVID Awareness Day on March 15. The resolution will also light the iconic City Hall teal.

@mileswgriffis.bsky.social was at City Hall and spoke with the advocates who made it happen: bit.ly/40BRxHT
February 26, 2026 at 7:37 PM
Reposted by Long COVID Justice
codbiter.bsky.social
Medical insurers are in the premium collection business, not the claims payment business
moreperfectunion.bsky.social More Perfect Union @moreperfectunion.bsky.social · Feb 23
In 2025 the seven biggest health insurance conglomerates made more than $54 billion in profit, despite covering 10 million fewer people than in 2024.

These corporate giant collected almost $1.7 trillion in revenue, $175 billion more than in 2024.

healthcareuncovered.substack.com/p/2025-big-i...
2025: Big Insurance’s $1.7 Trillion Year
America’s big seven health insurers raked in $54 billion in profits in 2025 — as they covered fewer people, raised prices and steered patients into their own subsidiaries and taxpayer-funded programs.
healthcareuncovered.substack.com
February 24, 2026 at 1:29 AM
Reposted by Long COVID Justice
panaccindex.bsky.social
More coming soon, don’t miss a thing! www.panaccindex.info/subscribe
Subscribe to Pandemic Accountability Index
A public registry of pandemic disinformation artists, the latest medical research on COVID-19, and biting commentary. Click to read Pandemic Accountability Index, by JJ Kogburne, a Substack publicatio...
www.panaccindex.info
February 24, 2026 at 11:06 PM
longcovidjustice.org
Although there is no known cure for Long COVID, there are many over-the-counter treatments that have helped patients find some relief from symptoms!

Learn more in this resource from our Long COVID Essentials series, created in partnership w/ @thesicktimes.org: longcovidjustice.org/supplements-otc
Background is purple and aqua gradient. Large blue text says: “Supplements & over-the-counter treatments that may help with Long COVID.” There is an illustration of several brightly colored pills next to a brown glass tincture bottle, in front of a purple circle with a wavy line around it. The footer reads, "Long COVID Essentials, www.tiny.cc/LCE. A series by The Sick Times x Long COVID Justice."
February 24, 2026 at 7:26 PM
longcovidjustice.org
Our hearts are with all of you fighting for justice, on Valentines Day and beyond. We can’t do this alone, and we won’t leave anyone behind.

MakesMeSick.org
@meactnet.bsky.social
February 14, 2026 at 6:26 PM
longcovidjustice.org
Disabled, chronically ill, & marginalized communities have long histories of organizing, educating, & caring for each other. We carry on this legacy by creating evidence-based resources on Long COVID & associated conditions – check out our explainer series, made with @thesicktimes.org! tiny.cc/LCE
Background is a purple and pink gradient with white text that says: “Our roses are red Our symptoms are torrential Forget the CDC Check out Long COVID Essentials.” Additional text includes a URL: “tiny.cc/LCE” In the upper right corner is a photo of a red rose with a starburst and sparkles around it. In the lower left corner is a blue violet with a starburst and sparkles. In the lower right corner are the logos for The Sick Times and Long COVID Justice. Background is a purple and pink gradient with white text that says: “Roses bloom red Violets can glisten Long COVID is real We need doctors to listen.” Below this are screencaps of two resource pages, which are titled “How to talk to healthcare providers about Long COVID” and “Where to get help for Long COVID.” Additional text includes a URL: “tiny.cc/LCE” In the upper right corner is a photo of a red rose with a starburst and sparkles around it. Along the lower edge are small blue violets and red roses with starbursts and sparkles.
February 13, 2026 at 5:31 PM
longcovidjustice.org
Action alert - We're co-sponsoring @meactnet.bsky.social's ICE Makes Me Sick campaign.

Use this easy tool to send a quick message to your House reps: makesmesick.org?source=direc...

Tell reps to stop bankrolling ICE violence while slashing our healthcare & homecare. Fund healthcare, not violence!
February 2, 2026 at 7:44 PM
longcovidjustice.org
The HIV Complexities Project (a program of Long COVID Justice) is excited to share this event hosted by our friends & comrades at Black South Rising @blacksouthrising.bsky.social, featuring three powerhouse speakers! ❤️‍🔥❤️‍🔥❤️‍🔥

Register: tiny.cc/Reckoning-Feb-4

#NationalBlackHIVAIDsAwarenessDay #NBHAAD
February 2, 2026 at 7:37 PM
Reposted by Long COVID Justice
crookedneighbor.bsky.social
I’m working on a story for @thesicktimes.org about things people with Long Covid and other energy-limiting illnesses (as well as their caregivers) can do to protect themselves and their communities from ICE. I’d love to speak with any of the following:

(1/3)
February 2, 2026 at 6:20 PM
Reposted by Long COVID Justice
peoplescdc.org
In this week's episode of the People's Health Briefing, Dr. Aboelata shares updates on contagious illnesses as well as dives in the overview and complications of measles.
www.youtube.com/live/NnUfNce...
Measles: Complications, Elimination Status, & SC Outbreak Grows; Contagious Illnesses Update || S7E3
YouTube video by Roots Community Health
www.youtube.com
January 20, 2026 at 3:59 PM
Reposted by Long COVID Justice
togetherwemask.bsky.social
The closing of ~80% of #LongCOVID clinics—which provided services that PCPs couldn’t—due to funding cuts, provider burnout and lack of approved treatments, is leaving ‘millions’ of LC patients to suffer without care. @scienceline.org 🧵 scienceline.org/2026/01/long...
Sharing an article from ScienceLine: “Long COVID clinics are quietly closing, leaving Millions (which we added in red and we crossed out “thousands” that’s part of the original headline) of patients without specialized care” | By Emma Smith    Subhead: Patients, providers and advocates say they are worried about the future of treatment   Quote: “Providers in Texas and New York who treat Long COVlD said that the closures may stem from funding cuts, provider burnout and the lack of approved treatments.”   Visual: A doctor holding a stethoscope  
January 14, 2026 at 7:09 PM
Reposted by Long COVID Justice
autisticadvocacy.org
We have seen a wave of dangerous proposals and policy changes from this administration that threaten the rights, freedom, and safety of disabled people. That’s why we’ve put together a resource debunking misinformation about autism and why it matters so much! autisticadvocacy.org/debunking-au...
Blue background with a white box containing a large exclamation point. Text reads: Debunking Autism Misinformation. Breaking down the harmful myths and attacks on our community. Blue background with text that reads: We have seen a wave of dangerous proposals and policy changes coming from this administration that threaten the rights, freedom, and safety of disabled people. From dangerous misinformation about autism, to attempts to shut down the Department of Education, to attacks on Medicaid and SNAP, these policies put all of us at risk. That's why we've put together a new resource breaking down what's happening, what it means for our community, and what's at stake. Blue background with text that reads: This resource covers many of the ongoing issues, including: Attempts to eliminate the Department of Education and gutting the Office for Civil Rights that enforces disability protections in schools. Pushing the harmful "profound autism" label to divide our community and ignore the real needs of our community, including people with high support needs. Slashing the Social Security Administration, leaving disabled people to die waiting for benefits we desperately need. Blue background, text reads: All disabled people deserve support, accessible education, and the freedom to live in our communities. We will not stay silent while our rights are under attack. Read the full resource, and share widely to tell politicians and billionaires that we reject the corruption, greed, and disregard for our lives we have seen from this administration.
January 13, 2026 at 5:00 PM
longcovidjustice.org
It’s World AIDS Day today. We’re thinking about the practices our communities have developed to keep each other alive—and the shifts we need to see in public health, from small groups to large institutions.
Aqua background with illustration of five purple-toned hands holding up white protest signs. The signs say: “Today we mark World AIDS Day.” “Our struggles are connected.” COVID isn’t over.” “Disability justice now.” “Silence equals death.” Along the bottom edge are logos for Long COVID Justice and Strategies for High Impact.
December 1, 2025 at 6:56 PM
Reposted by Long COVID Justice
thesicktimes.org
Did you know that trans people are more likely to report having Long COVID than cis people are?

On this annual Transgender Day of Resilience (TDOR), we’re sharing our resource on Long COVID in trans people.

Created with @longcovidjustice.org

longcovidjustice.org/lc-in-trans-people
A purple and teal ombre background has large blue title text that says: “Long COVID Trans People: Navigating Across Gender Clinics and Long COVID Care.” Below this is an illustration of a trans person with brown chair and short pink hair and pink high heels, sitting in a purple wheelchair with a big glowing pink heart in their arms. The footer reads, "Long COVID Essentials, www.tiny.cc/LCE. A series by The Sick Times x Long COVID Justice." Aqua and purple gradient background with white text boxes and black text that says: “Trans people are more likely to report having Long COVID than cis people are. According to one survey, over 27% of trans adults reported ever experiencing Long COVID as of September 2024, compared to 14% of cis men and 22% of cis women.” There is a graphic showing bars of various lengths to represent these percentages. Additional text says: “More research is needed. Some advocates suggest lower income and less access to healthcare among trans people could contribute to this pattern.” The footer reads, "Long COVID Essentials, www.tiny.cc/LCE.“ Aqua and purple gradient background is titled, “Options for talking to providers, continued.” Below this, a white text box has black text that says: “You can also request a referral to a Long COVID clinic, or another specialist who understands and sees people with Long COVID and related diseases. If possible, ask people in your community about recommendations for these providers. Note that not all Long COVID clinics are familiar with treating trans people.” Below this a green organic shape has black text that says: “Directories of Long COVID clinics, COVID-informed doctors, and more: Additional text includes the link to the webpage: “longcovidjustice.org/connect” The footer reads, "Long COVID Essentials, www.tiny.cc/LCE." Aqua and purple gradient background is titled, “Look out for more research.” Below this, a white text box has black text that says: “Some research suggests that sex hormones could influence the body’s immune response, which might affect the severity or symptoms of Long COVID. For example, one preprint (not yet peer reviewed) found that people with lower levels of testosterone were more likely to have worse Long COVID symptoms. This article includes more info about sex hormones and the immune system. More research is needed to better understand why trans people may be more at risk for Long COVID and to develop treatments.” The footer reads, "Long COVID Essentials, www.tiny.cc/LCE."
November 20, 2025 at 2:14 PM