Long COVID Justice
LightNews LightNews
longcovidjustice.org
Long COVID Justice
@longcovidjustice.org
4.6K followers 1.1K following 360 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
Posts Replies Media Videos
Pinned
longcovidjustice.org
Long COVID Justice @longcovidjustice.org · Jul 23
ICYMI: Did you know that Long COVID Justice and The Sick Times worked together to create a series of 30+ resource sheets about Long COVID and associated diseases (LCAC)?
‪
@longcovidjustice.org‬ x @thesicktimes.bsky.social

Check out our Long COVID Essential series: www.tiny.cc/LCE
Purple and teal gradient background with a purple starburst shape with white text that says “ICYMI.” There are three white text boxes with black text that says: A project by The Sick Times x Long COVID Justice. 30+resource sheets for patients & doctors. Designed by & for people living with Long COVID and associated conditions.” Below this is a blue illustration of a link and a blue oval with white text that says: “tiny.cc/LCE.”
longcovidjustice.org
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.
November 11, 2025 at 6:11 PM
longcovidjustice.org
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.
November 5, 2025 at 6:41 PM
Reposted by Long COVID Justice
thewhn.bsky.social
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.
October 28, 2025 at 2:32 PM
Reposted by Long COVID Justice
anthonymkreis.bsky.social
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.
October 27, 2025 at 1:11 AM
Reposted by Long COVID Justice
elizabethjacobs.bsky.social
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.
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
www.theguardian.com
October 27, 2025 at 2:47 PM
longcovidjustice.org
Does your doctor need more info on Long COVID?

Our new webpage features resources made FOR doctors, BY doctors!

longcovidjustice.org/providers
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...
longcovidjustice.org
October 27, 2025 at 2:30 PM
longcovidjustice.org
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.
October 15, 2025 at 4:46 PM
Reposted by Long COVID Justice
miamingus.bsky.social
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.
January 7, 2025 at 11:22 PM
Reposted by Long COVID Justice
thesicktimes.org
#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
September 26, 2025 at 5:20 PM
longcovidjustice.org
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
September 11, 2025 at 2:25 PM
longcovidjustice.org
Looking forward to hearing from our former co-executive director @crankyqueer.bsky.social and many others at this critical event!
crankyqueer.bsky.social Cranky Queer Guide to Chronic Illness @crankyqueer.bsky.social · Sep 10
Honored to be a part of this! Speaking on Wed 9/17 10am Eastern on #LongCOVID & #HIV research & the vital need for #plhiv, #patientLed & community-led leadership/advocacy! @patientled.bsky.social @longcovidfam.bsky.social @longcovidjustice.org @plhivcaucus.bsky.social #hivresearch #disabilityjustice
saveaidsresearch.bsky.social saveaidsresearch.bsky.social @saveaidsresearch.bsky.social · Sep 10
Join us on September 16 for 24 Hours to Save AIDS Research! Speakers include Allison Agwu, Monica Gandhi, Luke Davis, Loreen Willenberg and so many more! Register bit.ly/45U1keO and join us on YouTube bit.ly/45Qftts. #HIV #saveAIDSresearch #HIVresearch
September 11, 2025 at 2:19 PM
longcovidjustice.org
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
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...
givebutter.com
September 3, 2025 at 3:32 PM
Reposted by Long COVID Justice
editorialboard.bsky.social
"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.
September 3, 2025 at 2:12 PM
Reposted by Long COVID Justice
melodyschreiber.com
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...
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
www.theguardian.com
September 3, 2025 at 3:14 PM
longcovidjustice.org
Following this news - and hoping to see some larger trials studying this!
erictopol.bsky.social Eric Topol @erictopol.bsky.social · Sep 2
A nasal spray reduced the risk of Covid infections in a double blind, placebo controlled randomized trial
jamanetwork.com/journals/jam...
September 2, 2025 at 9:29 PM
longcovidjustice.org
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.
August 22, 2025 at 3:45 PM
longcovidjustice.org
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!
ylepidemiologist.bsky.social Your Local Epidemiologist @ylepidemiologist.bsky.social · Aug 18
1/ Quick update on #fallvaccines:

Flu and RSV vaccines remain business as usual this fall: if you’re eligible, you should be able to get them without issue. Vaccinations should start in September.

Covid-19 vaccines are another story. There will be three key developments this week 👇
August 19, 2025 at 5:34 PM
longcovidjustice.org
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."
August 8, 2025 at 6:24 PM
Reposted by Long COVID Justice
crankyqueer.bsky.social
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
crankyqueer.bsky.social Cranky Queer Guide to Chronic Illness @crankyqueer.bsky.social · Dec 19
So proud to be a part of this project! Thank you to @thesicktimes.bsky.social and @longcovidjustice.bsky.social and to all the fantastic writers, translator @lygianavarro.com, medical reviewers and patient reviewers!
longcovidjustice.org Long COVID Justice @longcovidjustice.org · Dec 19
We are thrilled to release the next batch of resources in our Long COVID Essentials series, created in partnership with @thesicktimes.bsky.social!
August 7, 2025 at 1:34 AM
Reposted by Long COVID Justice
doritreiss.bsky.social
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
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.
www.nbcnews.com
August 6, 2025 at 4:55 PM
Reposted by Long COVID Justice
luckytran.com
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.
August 6, 2025 at 5:13 PM
longcovidjustice.org
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.
August 6, 2025 at 3:37 PM
Reposted by Long COVID Justice
lauralew105.bsky.social
“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...
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.
apnews.com
August 6, 2025 at 2:52 PM
Reposted by Long COVID Justice
vashetc.bsky.social
My lawyer friends asking me if I want to sue a gov agency for funsies and I’m like dang I’m so glad we have the same idea of fun 😊
July 30, 2025 at 6:59 PM
Reposted by Long COVID Justice
juliametraux.bsky.social
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...
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.
www.motherjones.com
July 30, 2025 at 7:02 PM