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Long COVID Justice

@longcovidjustice.org
4.9K followers 1.1K following 436 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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Long COVID Justice @longcovidjustice.org · 03/09/2026
And get lots more info in our latest news post! longcovidjustice.org/vaccines-new...
longcovidjustice.org
Vaccine news: FDA approves updated COVID vax - Long COVID Justice
Last updated: 9/2/26 The U.S. Food and Drug Administration (FDA) has approved Novavax-Sanofi, Pfizer-BioNTech and Moderna’s updated COVID vaccines.  Here’s a quick summary of what we know now, and we’...
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Long COVID Justice @longcovidjustice.org · 03/09/2026
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.”
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The Sick Times @thesicktimes.org · 11/06/2026
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.
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Long COVID Justice @longcovidjustice.org · 05/06/2026
(Illder = elders who are chronically ill & disabled. This term was coined by our co-founder @crankyqueer.bsky.social This reel features clips from our recent webinar on HIV Complexities, disability justice, and mutual aid. Learn more & get the link to the full video at longcovidjustice.org/hcp
longcovidjustice.org
HIV Complexities Project - Long COVID Justice
The HIV Complexities Project is led by and for people living with HIV (PLHIV) and complex chronic conditions. The project has a broad reach, and includes: An online support group for PLHIV with comple...
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Long COVID Justice @longcovidjustice.org · 05/06/2026
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
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The Sick Times @thesicktimes.org · 29/04/2026
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.
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Long COVID Justice @longcovidjustice.org · 29/04/2026
Thanks for the boost! We are looking forward to sharing this project with our communities 💜
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Long COVID Justice @longcovidjustice.org · 28/04/2026
We hope our Long COVID stories can offer a point of connection and solace for anyone living with this disease. They also serve as sources of education & challenge for anyone who is engaged in COVID denialism. We're building a living history of Long COVID - join us! tiny.cc/LFLH
Event promotion graphic with green, blue and purple gradient background. In the upper left, a black quote bubble has yellow text that says: “New Long COVID oral history website.” Next to this is the logo for Listening for the Long Haul. Additional black text says: "Launch event featuring: Chimére L. Sweeney, The Black Long COVID Experience. Jacquie Luciano, Breathing for Justice. Tracey Thompson, BIRCH (Black Indigenous Racialized Covid Health). Una Osato, Patient advocate & community artist. Plus project organizers Dr. Jennie Brier, Kaimara Herron, & Gabriel San Emeterio.”

On the right side, a black circle holds yellow text that says: “WEDS MAY 6, 4:30-6pm ET, zoom.” In the lower left corner a black text bubble with yellow text says: “Register & learn more: tiny.cc/LFLH.”
 Along the bottom edge are the logos for Long COVID Justice and History Moves.
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Long COVID Justice @longcovidjustice.org · 28/04/2026
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.
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 16/04/2026
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...
win.newmode.net
New/Mode | Make your voice impossible to ignore
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s. e. smith @sesmith.lol · 10/04/2026
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.
kffhealthnews.org
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...
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Long COVID Justice @longcovidjustice.org · 10/04/2026
See you on May 6! Learn more & register: tiny.cc/lflh-launch
tiny.cc
Listening for the Long Haul: Join us to launch a new Long COVID oral history website
Join us to celebrate the launch of our new Long COVID oral history website! Listening for the Long Haul (LFLH) is an oral history project grounded in disability justice that features 20+ interviews with people living with Long COVID and associated conditions (LCAC). At the launch, you’ll hear from project organizers and participants about their experience in creating a community-centered, people’s history of Long COVID. We’ll share the story behind the project, highlights from the interviews, and more.
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Long COVID Justice @longcovidjustice.org · 10/04/2026
FEATURED SPEAKERS for May 6 Project coordinators: • Jennie Brier, UIC professor & LFLH project lead • Kaimara Herron, UIC PhD student & LFLH project manager • Gabriel San Emeterio, Long COVID Justice senior fellow, @gabrielhse.bsky.social
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Long COVID Justice @longcovidjustice.org · 10/04/2026
FEATURED SPEAKERS for May 6 Project participants: • Jacquie Luciano, Patient advocate & Long COVID Advisor for National Organization for Nurses with Disabilities • Tracey Thompson, BIRCH (Black Indigenous Racialized Covid Health), linktr.ee/haziethompson • Una Osato, Artist & patient advocate
linktr.ee
Hazie Thompson | Instagram, TikTok | Linktree
Linktree. Make your link do more.
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Long COVID Justice @longcovidjustice.org · 10/04/2026
FEATURED SPEAKERS for May 6 Project participants: • Chimére L. Sweeney, Founder of The Black Long COVID Experience, www.blacklongcovidexperience.com/
blacklongcovidexperience.com
The Black Long Covid Experience - Home
Join Chimére L. Sweeney, the #1 Activist, Writer, and Speaker in Black Long Covid communities. Sweeney empowers Black Americans and other marginalized communities affected by long COVID with essential resources, expert guidance, and community support.
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Long COVID Justice @longcovidjustice.org · 10/04/2026
Our stories are powerful, and our hope is that we can use them to shift the narrative of Long COVID – including educating healthcare providers and creating concrete changes in the care and support that we need and deserve.
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Long COVID Justice @longcovidjustice.org · 10/04/2026
This project is an offering to our fellow longhaulers. We're sharing our struggles and joys, moments of connection and isolation, tales of survival and solidarity. We’re building a living history of Long COVID, and pushing back against COVID denialism and ableism.
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Long COVID Justice @longcovidjustice.org · 10/04/2026
This includes many voices from marginalized communities and intersectional identities, including a variety of identities across race, gender, disability, class, immigrant status, location, and more.
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Long COVID Justice @longcovidjustice.org · 10/04/2026
Rather than try to create a singular, mainstreamed account of Long COVID, we collected a variety of stories from a small group of people most impacted by LCAC and its social & economic ripple effects.
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Long COVID Justice @longcovidjustice.org · 10/04/2026
At our May 6 launch event, you’ll hear from project organizers and participants about their experience in creating a community-centered, people’s history of Long COVID. We’ll share the story behind the project, highlights from the interviews, and more.
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Long COVID Justice @longcovidjustice.org · 10/04/2026
Listening for the Long Haul is an oral history project grounded in disability justice that features 20+ interviews with people living with Long COVID and associated conditions (LCAC). It was created by Long COVID Justice in collaboration with History Moves / Univ of Illinois Chicago. l4lh.org
l4lh.org
Listening for the Long Haul
This is a test description for the Listening for the Long Haul website.
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Long COVID Justice @longcovidjustice.org · 10/04/2026
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.
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Long COVID Justice @longcovidjustice.org · 13/03/2026
Join us for the launch event - sign up now & you'll get an invite in your inbox! actionnetwork.org/forms/s4hi-s...
Background is aqua and purple gradient. Large gradient text across the top says: "Listening for the Long Haul.” Additional black text says: “Join us for our launch event!”

In the center is a black quote bubble with yellow text that says: “Long COVID oral history.” Additional text says: “Coming soon: Virtual launch event with speakers. Sign up now & get an invite in your inbox: tiny.cc/joinLCJ

In the lower right are logos for Long COVID Justice and History Moves.
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Long COVID Justice @longcovidjustice.org · 13/03/2026
Oral histories can humanize an emergent, unsettling condition: both the illness itself, which manifests in confusing & often contradictory symptoms that don't map neatly onto diagnostic criteria familiar to most healthcare providers; & the many social & economic impacts on longhaulers & caregivers.
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Long COVID Justice @longcovidjustice.org · 13/03/2026
Interviewees have also developed life-sustaining forms of disability justice beyond and outside these institutions and systems projecting themselves and their communities into a future built by and for them.
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Long COVID Justice @longcovidjustice.org · 13/03/2026
Instead, LFLH interviewees detail experiences of systemic social, economic, and political conditions that shaped their experience of the pandemic and continue to impact their lives.
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Long COVID Justice @longcovidjustice.org · 13/03/2026
Listening for this Long Haul (LFLH) does not aim to document a succinct and linear narrative of COVID that began in March 2020 and ended in May 2023 with the official governmental end of the pandemic emergency.
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Long COVID Justice @longcovidjustice.org · 13/03/2026
We created this oral history project in partnership with History Moves at University of Illinois-Chicago. Together, we trained and supported a group of people living with Long COVID to interview other longhaulers in their communities, and to tell their own stories.
Background is aqua and purple gradient. A quote box has text that says: “Listening for the Long Haul is a truly collaborative project, in which chronically ill and disabled people work together to tell our stories, with full control over our narratives and how they’re presented. It’s in the truest spirit of disability justice: ‘Nothing about us without us!’ - Gabriel San Emeterio, Long COVID Justice Senior Fellow.”
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Long COVID Justice @longcovidjustice.org · 13/03/2026
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.
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Long COVID Justice @longcovidjustice.org · 05/03/2026
Keep loving, keep fighting! #LongCOVIDAwarenessMonth
Dark blue textured background with white text that says: “our hearts are with you for long covid awareness month, 
in love
in rage
in fear
in hope
in solidarity. 
keep loving, keep fighting.”

There are teal illustrations of a heart with an awareness ribbon, and a raised fist in front of blooming flowers.
Along the bottom edge are the logos for Long COVID Justice and The Sick Times.
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Long COVID Justice @longcovidjustice.org · 05/03/2026
And check out the full Long COVID Essentials resource series at longcovidjustice.org/essentials All infosheets are made by and for people living with Long COVID and associated conditions, and were reviewed by top medical experts who treat and research this disease.
Aqua background with blue and black text that says: Long COVID Essentials, a series by The Sick Times x Long COVID Justice. 30+ resource sheets designed by and for people living with Long COVID & associated conditions, in English & Spanish.”

Additional text says: “Includes: online version of resources with live links to more info, plus printable handouts & flyers!” Below this are image of a web page and promo postcard. The footer reads, "www.tiny.cc/LCE."
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Long COVID Justice @longcovidjustice.org · 05/03/2026
Check out our related resource: Supplements & over-the-counter treatments that may help with Long COVID & associated conditions longcovidjustice.org/supplements-otc
longcovidjustice.org
Supplements & over-the-counter treatments that may help with Long COVID - Long COVID Justice
from LONG COVID ESSENTIALSa resources series by The Sick Times x Long COVID Justice Though there is no cure for Long COVID, many over-the-counter treatments have helped patients find some relief from ...
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Long COVID Justice @longcovidjustice.org · 05/03/2026
This quick guide will help you learn about off-label medications & treatments that might be helpful for different symptoms. longcovidjustice.org/off-label-meds Always talk to your doctor before trying new meds - be sure to ask about side effects & possible interactions with your other meds!
longcovidjustice.org
Using existing medications off-label for Long COVID - Long COVID Justice
from LONG COVID ESSENTIALSa resources series by The Sick Times x Long COVID Justice There are currently no medications approved by the Food and Drug Administration (FDA) to treat Long COVID. However, ...
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Long COVID Justice @longcovidjustice.org · 05/03/2026
“Off-label” means a medication is being used to treat a condition that it wasn’t FDA-approved for. Off-label medications don’t work for everyone. It can also be harder to get insurance to cover off-label treatments.
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Long COVID Justice @longcovidjustice.org · 05/03/2026
There are currently no medications approved by the Food and Drug Administration (FDA) to treat Long COVID. However, there are off-label medications that may help provide some relief for common symptoms.
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Long COVID Justice @longcovidjustice.org · 05/03/2026
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."
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✨️Jill Kelley (she/they)✨️ @justicejoyandjill.bsky.social · 02/03/2026
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
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Long COVID Justice @longcovidjustice.org · 26/02/2026
Thanks everyone who supported this campaign! Shout out to @cleanairla.bsky.social for spearheading these efforts 💜
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Rob McCarthy @codbiter.bsky.social · 24/02/2026
Medical insurers are in the premium collection business, not the claims payment business
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Pandemic 𓅃. Index @panaccindex.bsky.social · 24/02/2026
More coming soon, don’t miss a thing! www.panaccindex.info/subscribe
panaccindex.info
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...
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Long COVID Justice @longcovidjustice.org · 24/02/2026
Thanks so much for sharing this, glad to hear the resources are helpful!
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Long COVID Justice @longcovidjustice.org · 24/02/2026
And check out the full Long COVID Essentials resource series at longcovidjustice.org/essentials All infosheets are made by and for people living with Long COVID and associated conditions, and were reviewed by top medical experts who treat and research this disease.
Aqua background with blue and black text that says: Long COVID Essentials, a series by The Sick Times x Long COVID Justice. 30+ resource sheets designed by and for people living with Long COVID & associated conditions, in English & Spanish.”

Additional text says: “Includes: online version of resources with live links to more info, plus printable handouts & flyers!” Below this are image of a web page and promo postcard. The footer reads, "www.tiny.cc/LCE."
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Long COVID Justice @longcovidjustice.org · 24/02/2026
We also have a resource on Using existing medications off-label for Long COVID: longcovidjustice.org/off-label-meds
longcovidjustice.org
Using existing medications off-label for Long COVID - Long COVID Justice
from LONG COVID ESSENTIALSa resources series by The Sick Times x Long COVID Justice There are currently no medications approved by the Food and Drug Administration (FDA) to treat Long COVID. However, ...
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Long COVID Justice @longcovidjustice.org · 24/02/2026
Tracking your symptoms is also key - Long COVID is a multi-systemic disease, meaning it can affect every organ in the body. As a result, there are over 200 symptoms associated with the disease. Get tips for syptom tracking: longcovidjustice.org/track-symptoms
longcovidjustice.org
Tracking your symptoms - Long COVID Justice
from LONG COVID ESSENTIALSa resources series by The Sick Times x Long COVID Justice Long COVID is a multi-systemic disease, meaning it can affect every organ in the body. As a result, there are over 2...
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Long COVID Justice @longcovidjustice.org · 24/02/2026
This quick guide will help you learn about over-the-counter (OTC) medications and supplements that might be helpful for different symptoms. Always check with your doctor before trying new treatments, and try just 1-2 at a time. Get more tips on the webpage: longcovidjustice.org/supplements-otc
longcovidjustice.org
Supplements & over-the-counter treatments that may help with Long COVID - Long COVID Justice
from LONG COVID ESSENTIALSa resources series by The Sick Times x Long COVID Justice Though there is no cure for Long COVID, many over-the-counter treatments have helped patients find some relief from ...
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Long COVID Justice @longcovidjustice.org · 24/02/2026
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."
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Long COVID Justice @longcovidjustice.org · 14/02/2026
Check out the Disability Project of Transgender Law Center! transgenderlawcenter.org/disability
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Long COVID Justice @longcovidjustice.org · 14/02/2026
StopMaskBans.com ~ We partnered with @fightforthefuture.org for this campaign. Join us!
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Long COVID Justice @longcovidjustice.org · 14/02/2026
Check out SaveHIVFunding.org for action steps & info!
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Long COVID Justice @longcovidjustice.org · 14/02/2026
Resources for accessible, COVID-safer direct actions: tiny.cc/direct-action. Protest in the streets or from your bed!
Background is a purple and peach gradient circle with black text that says: 
“Violets are blue
Infections ain’t exciting
Our movements need us-
Mask up & keep fighting!”

There’s an illustration of an iridescent blue violet flower in the upper right corner. 

Additional text says: “Resources for accessible, COVID-safer direct actions: tiny.cc/direct-action. Protest in the streets or from your bed!”

The Long COVID Justice logo is in the lower right next to a purple heart.
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