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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
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
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 · 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
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
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
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
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
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
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Long COVID Justice @longcovidjustice.org · 13/02/2026
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.
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Long COVID Justice @longcovidjustice.org · 02/02/2026
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!
makesmesick.org
ICE Makes Me Sick—Fund Healthcare, Not Violence!
Tell Congress to stop bankrolling ICE violence while slashing our healthcare and home care.
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Long COVID Justice @longcovidjustice.org · 02/02/2026
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
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Miranda 🌸 @crookedneighbor.bsky.social · 02/02/2026
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)
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People's CDC @peoplescdc.org · 20/01/2026
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...
youtube.com
Measles: Complications, Elimination Status, & SC Outbreak Grows; Contagious Illnesses Update || S7E3
YouTube video by Roots Community Health
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MaskTogetherAmerica @togetherwemask.bsky.social · 14/01/2026
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 
 
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Autistic Self Advocacy Network (ASAN) @autisticadvocacy.org · 13/01/2026
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.
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Long COVID Justice @longcovidjustice.org · 01/12/2025
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.
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The Sick Times @thesicktimes.org · 20/11/2025
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."
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Long COVID Justice @longcovidjustice.org · 11/11/2025
We're thinking about these powerful words from disability justice activist @miamingus.bsky.social, and reflecting on all the work we must do to keep fighting for Long COVID justice and #disabilityjustice!
Black text overlaid on a pink and yellow gradient circle says: “It is in the interest of those in power to keep people uncared for, sick and dependent on dwindling crumbs. This is one reason why ableism and poverty are so effective and why they are so often inseparable. - Mia MIngus.”  Long COVID Justice logo is in the lower right.
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Long COVID Justice @longcovidjustice.org · 05/11/2025
Pandemic precautions should be universal & sacred! We’re gathering resources to make sure we can keep this work going into 2026. Have you found our work helpful? Let us know by making a gift tiny.cc/give2lcj or sharing a comment! Every dollar makes a big impact for our small org, from $5 to $500
Black text overlaid on purple circles says: “Pandemic precautions should be universal and sacred. Mutual aid, collective, care, resistance. We keep us safe.” There are illustrations of a KN95 mask and raised fist in purple tones. Long COVID Justice logo is in the lower right.
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World Health Network @thewhn.bsky.social · 28/10/2025
Medical masks were never designed to protect the wearer — and leading safety authorities are finally saying so. Only respirators (like N95s) qualify as Personal Protective Equipment (PPE). Read more: whn.global/whn-joins-in.... #PublicHealth #N95 #MaskUp #Masking
White WHN graphic with headline in bold black and red: “MEDICAL MASKS ARE NOT PPE.” Center shows a blue surgical/medical mask inside a red “no” symbol (circle with a diagonal slash). Body text below: “New statements from leading safety authorities confirm what experts have said all along — only respirators protect against airborne infection. Medical masks are not PPE.” Footer displays the link: “whn.global/whn-joins-in-the-chorus-medical-masks-are-not-ppe.” Small whn.global logo at the top.Clean white WHN slide. Large heading: “Why this matters.” Paragraph: “Throughout the pandemic, confusion over mask types led to unsafe guidance for both the public and healthcare workers. Even today, many hospitals still rely on surgical masks for ‘protection’ — when in fact, they are not PPE at all.”
Subheading: “Experts are setting the record straight.” Bulleted list:
• British Occupational Hygiene Society (BOHS): It’s a breach of health and safety law to claim surgical masks protect against inhaled hazards.
• Canadian Standards Association (CSA): Only respirators (N95, KN95, FFP2, etc.) qualify as PPE.
• FDA & CDC: Medical masks are for source control — not personal protection.
Small whn.global logo at the top.
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Anthony Michael Kreis @anthonymkreis.bsky.social · 27/10/2025
Whenever people complain about the number of folks relying on food stamps, it is worth reminding them that SNAP is, by too large of a degree, a subsidy for corporations that refuse to pay a living wage and their political allies who reject public policy prescriptions to reduce income inequality.
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Elizabeth Jacobs, PhD @elizabethjacobs.bsky.social · 27/10/2025
RFK Jr. will eliminate as many vaccines as he can. Every step he takes at the CDC is in service of this aim, as well as undermining public health infrastructure overall. He cannot tolerate scientists who know more than he does, so they must go. Another great piece by @melodyschreiber.com.
theguardian.com
Threat to US vaccines as CDC staff supporting key advisory panel laid off
Critics say scientists ‘held hostage’ by RFK Jr as changes mean vaccine development and guidance in peril
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Long COVID Justice @longcovidjustice.org · 27/10/2025
Does your doctor need more info on Long COVID? Our new webpage features resources made FOR doctors, BY doctors! longcovidjustice.org/providers
longcovidjustice.org
Resources for healthcare providers & researchers - Long COVID Justice
Resources and clinical guidance to share with your providers – or if you’re a provider, share with your colleagues. For doctors & healthcare providers Overview Still Masked, Still Right: A Data-Driven...
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Long COVID Justice @longcovidjustice.org · 15/10/2025
ICYMI: A call for all People Living with HIV and allies: it's time to reignite our movement to fight for our lives and improve our quality of life. HIV COMPLEXITIES THURS OCT 16, 6:30–8:00 PM ET Zoom • Free! Learn more & register: longcovidjustice.org/events/#hcpweb
Event flyer with black wavy banner with orange and aqua text that says: “HIV Complexities, October 16, a webinar and community convo for PLHIV & complex chronic conditions.” Below this is a pastel gradient background with a black circle featuring four round photos of the speakers. The photos are labeled with their names: “Tori Cooper,” "Sylvester Askins, Jr.,“John Chaffin,” “Broderick Disroe,” and “Gabriel San Emeterio.” Additional text below says: “Presented by Long COVID Justice and S4HI, www.tiny.cc/hcp1024.
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Mia Mingus @miamingus.bsky.social · 07/01/2025
When you feel yourself becoming complacent or surrendering to hopelessness or apathy, remember that everything that exists today exists because someone(s) dreamt it up and decided to put in the work to make it a reality. We can create new ways of doing things, new ways of being, new worlds.
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The Sick Times @thesicktimes.org · 26/09/2025
#LongCOVID is not functional neurological disorder (FND), but some patients are getting diagnosed with it. Here’s @davetuller1.bsky.social on what to do if it happens to you: bit.ly/4mxAyiB
 Photo of an art piece: a white object, shaped like an egg, with painted representations of the virus SARS-CoV-2 across its surface. The text reads, "The Sick Times. Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you. By David Tuller." What people with Long COVID should do if they receive an FND diagnosis: 

Ask about the basis for the diagnosis. A clinician may render an FND diagnosis when medical tests are negative. That means people with Long COVID and other conditions that lack validated biomarkers might be particularly vulnerable to misdiagnosis. However, FND is not supposed to be a diagnosis of exclusion — that is, a diagnosis given solely because nothing else has been found. 

Don’t automatically accept the diagnosis as final. “Don’t be afraid to question it if it doesn’t feel like the diagnosis fits your symptoms,” said Hargrave. Davenport echoed that advice. “Don’t take it for a definitive answer,” he said. “It’s okay to seek another opinion.” 
What people with Long COVID should do if they receive an FND diagnosis

Keep a full account of your medical care, said Joffe, the Australian expert. “Carefully document all neurological interactions,” he said. “Keep copies of the letters written and all the results. That’s crucial. Not infrequently, I find that something has been missed or overlooked in my patients. Having the original letters and studies is very illuminating.”

Be aware that having an existing FND diagnosis in medical charts might influence the judgment of subsequent clinicians, and take steps to address this issue. David Putrino recommends working with your primary care provider “to have that diagnosis removed from your medical records.”

"Don’t be afraid to question it if it doesn’t feel like the diagnosis fits your symptoms. Don’t take it for a definitive answer. It’s okay to seek another opinion." - Todd Davenport, Professor of physical therapy at the University of the Pacific in Stockton, California
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Long COVID Justice @longcovidjustice.org · 11/09/2025
We're excited to announce our new support group for people living with HIV and other complex conditions, hosted by Gabriel San Emeterio, LMSW @gabrielhse.bsky.social, Senior Fellow at Long COVID Justice and member of the HIV Caucus @plhivcaucus.bsky.social Interest form & details: bit.ly/hiv-group
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Long COVID Justice @longcovidjustice.org · 11/09/2025
Looking forward to hearing from our former co-executive director @crankyqueer.bsky.social and many others at this critical event!
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Long COVID Justice @longcovidjustice.org · 03/09/2025
We're excited to share this upcoming event presented by Sista Creatives Rising, featuring “stories of BIPOC, COVIDing and Multi-Marginalized Creatives.” Check it out! Art & Mind: COVID, Climate & Our Future Sept. 25, 6:30-9:30pm ET on Zoom FREE tix: givebutter.com/Covidclimatefuture
givebutter.com
Sista Creatives Rising Presents: Art & Mind - COVID, Climate & Our Future!
“Art & Mind: I Know Who I Am!" is a virtual Zoom documentary & fundraiser event showcasing women of color & femmes of color finding healing in art. Hosted by Black disabled mother-daughter duo Sista C...
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The Editorial Board @editorialboard.bsky.social · 03/09/2025
"Vaccine skeptics" is propaganda. The press needs to stop using the phrase. Kennedy is hiring liars and scammers, not skeptics. All scientists are skeptics. That's what science is. And we should be skeptical of vaccines until they are proven to be effective. Again, that's science.
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Melody Schreiber @melodyschreiber.com · 03/09/2025
Foreign aid funds, including for PEPFAR, are being withheld illegally by the Trump administration despite being appropriated by Congress, advocates and experts say. My latest, featuring @agawande.bsky.social and @jenkatesdc.bsky.social: www.theguardian.com/us-news/2025...
theguardian.com
Protesters demand release of HIV funds ‘illegally’ withheld by Trump
People take to streets against Trump administration plans to rescind funding for life-saving international programs
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Long COVID Justice @longcovidjustice.org · 02/09/2025
Following this news - and hoping to see some larger trials studying this!
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Long COVID Justice @longcovidjustice.org · 22/08/2025
Join us for an urgent conversation about disability justice for People Living with HIV #PLHIV and, often underdiagnosed, co-occurring complex chronic conditions like #LongCOVID, #MECFS, & frailty. REGISTER: tiny.cc/hcp1024 Recording & resources will be sent to all who register.
Pastel rainbow gradient background. Large dark navy text box with orange text that says: “HIV Complexities. Join us for an urgent conversation about disability justice for People Living with HIV and co-occurring complex chronic conditions like Long COVID, ME/CFS, & frailty. THURS OCT 16 
6:30–8:00 PM ET – ZOOM. REGISTER: tiny.cc/hcp1024”

Below this are logos for Long COVID Justice and S4HI.
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Long COVID Justice @longcovidjustice.org · 19/08/2025
Important alert! Many people in the U.S. are rushing to get another COVID vaccine *before Friday*, bc of fears that the FDA will restrict access to adults 65+ and people at high risk (we don't know exactly how that will be defined.) Learn more in this post & in the comments inc tips on pharmacies!
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Long COVID Justice @longcovidjustice.org · 08/08/2025
Today is Severe ME Awareness Day, and we’re sharing our explainer about Severe ME. Highlights in thread, and check out the full resource at longcovidjustice.org/severe-me This is part of the Long COVID Essentials series by @longcovidjustice.org + @thesicktimes.bsky.social
A purple and teal ombre image has blue and black text that says: “Dealing with Severe ME after COVID-19?
 
tips for living with severe myalgic encephalomyelitis (ME), including:
• understanding common symptoms
• tips for managing your energy
• finding care & support
• resources for patients and doctors

 The footer reads, "Long COVID Essentials, www.tiny.cc/LCE. A series by The Sick Times x Long COVID Justice."
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Cranky Queer Guide to Chronic Illness @crankyqueer.bsky.social · 07/08/2025
As we head into the 11th #COVID wave in the US, predicted to peak in mid-September, wanted to reshare these vital info resources in English and Spanish from @thesicktimes.org & @longcovidjustice.org on #COVID19 and #LongCOVID
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Dorit Reiss @doritreiss.bsky.social · 06/08/2025
Will health insurance pay for Covid vaccines this fall? It's unclear. Here's what we know and do not. www.nbcnews.com/health/healt... via @nbcnews.com
nbcnews.com
Will health insurance pay for Covid vaccines this fall?
HHS Secretary Robert F. Kennedy Jr. has upended the way Covid vaccines are approved and for whom they’re recommended, creating uncertainty around coverage.
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Dr. Lucky Tran @luckytran.com · 06/08/2025
No, it's not only the US who will suffer from RFK Jr cancelling vaccine research. 1️⃣ You can't just instantly teleport research projects. Cancelling US projects slows global progress. 2️⃣ Preventing pandemics will always be a group project. The US is letting the team down & putting the world at risk.
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Long COVID Justice @longcovidjustice.org · 06/08/2025
Meet Jenna! Over the next few weeks, we’ll be introducing people who are working to shift the narrative around Long COVID, as part of our Listening for the Long Haul (LFLH) project.
Background is a yellow and mint green gradient. Large black text says: “My crip kin hold the deepest and most profound wisdom about how to survive in a world of denialism, gaslighting, and racial capitalism - surviving by taking care of each other through this pandemic and the next. - Jenna Bitar.”

In the lower left corner is a large image of Jenna, overlaid with green text that says “Meet Jenna.” Additional text says: “Listening for the Long Haul, Long COVID oral history project.” Below this are logos for History Moves and Long COVID Justice.
Background is a yellow and mint green gradient. Large black text says: “Most disabled people have been violently rejected from health care, work, family systems, and even activist spaces. We survive by sharing knowledge, resources, and tools, with care webs we weave together. - Jenna Bitar.”

In the lower left corner is a large image of Jenna, overlaid with green text that says “Meet Jenna.” Additional text says: “Listening for the Long Haul, Long COVID oral history project.” Below this are logos for History Moves and Long COVID Justice.
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Laura Weiss @lauralew105.bsky.social · 06/08/2025
“I don’t think I’ve seen a more dangerous decision in public health in my 50 years in the business." apnews.com/article/kenn...
apnews.com
RFK Jr. pulls $500 million in funding for vaccine development
The Department of Health and Human Services plans to cancel contracts and pull funding for some vaccines being developed to fight respiratory viruses like COVID-19 and the flu.
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Julia Métraux @juliametraux.bsky.social · 30/07/2025
As I reported earlier this year, the attacks on social security and its offices will have a disproportionate impact on retirees of color. Latino and Black people are more likely to have their sole source of income in retirement be social security. www.motherjones.com/politics/202...
motherjones.com
Republicans' Social Security attacks disproportionately hurt retirees of color
Trump and Musk's fake fraud stories are doing real harm—especially if you're not white and wealthy.
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