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Long COVID Justice

@longcovidjustice.org

4.6K followers 1.1K following 320 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 · 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.”

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Reposted by Long COVID Justice

The Sick Times @thesicktimes.org · 13d

#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 · 21d

Yes we'd love to translate Long COVID Essentials into more languages! In the meantime we're collecting links to resources in various languages for a new webpage

@longcovidphysio.bsky.social has great videos in many languages - here is the Arabic page: longcovid.physio/arabic-long-covid-video-series

(Arabic) سلسلة فيديوهات كوفيد طويل الأمد — Long COVID Physio

لقد شرعت لونغ كوفيد فيزيو في شراكة مع فيزيوكاميرا لتقديم سلسلة من الفيديوهات التعليمية حول كوفيد طويل المدى

longcovid.physio

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Long COVID Justice @longcovidjustice.org · 21d

@longcovidphysio.bsky.social has some great videos that are translated into many languages - here is the Arabic page: longcovid.physio/arabic-long-covid-video-series

(Arabic) سلسلة فيديوهات كوفيد طويل الأمد — Long COVID Physio

لقد شرعت لونغ كوفيد فيزيو في شراكة مع فيزيوكاميرا لتقديم سلسلة من الفيديوهات التعليمية حول كوفيد طويل المدى

longcovid.physio

Long COVID Justice @longcovidjustice.org · 26d

Looking forward to it!

Long COVID Justice @longcovidjustice.org · 28d

Learn more & fill out the interest form at bit.ly/hiv-group

Background is a light rainbow gradient. Black text across the top says: “The Complexities of Living with HIV: A Support Group.” Below this is a black text box with white and orange text that says: “Are you living with HIV and also experiencing any of these?
Chronic fatigue
Chronic pain
Brain fog or memory/thinking issues
Frailty
New or worsening health issues after a COVID infection, leading to Long COVID* or conditions like ME/CFS, POTS, or dysautonomia

If any of this resonates with you, this group is for you.

* Long COVID = symptoms that last 3+ months after infection, especially if they were new or worsened post-COVID.”

S3: Background is a light rainbow gradient. Black text across the top says: “The Complexities of Living with HIV: A Support Group.” Below this is a black text box with white and orange text that says:
“Format: Open Zoom sessions (pre-registration required). Drop-in style - join any or all sessions!

Schedule: Every Thursday for 10 sessions, October 2 - December 11, 2025

Time: TBD - Vote on a timeslot on the interest form

Cost: Free!

Questions? Write to: gabriel@s4hi.org

Learn more & fill out the form: bit.ly/hiv-group”

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Long COVID Justice @longcovidjustice.org · 28d

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 · 28d

Looking forward to hearing from our former co-executive director @crankyqueer.bsky.social and many others at this critical event!

Cranky Queer Guide to Chronic Illness @crankyqueer.bsky.social · 28d

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 · 29d

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

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Long COVID Justice @longcovidjustice.org · Sep 3

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

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Reposted by Long COVID Justice

The Editorial Board @editorialboard.bsky.social · Sep 3

"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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Reposted by Long COVID Justice

HELLody SchreiBOO @melodyschreiber.com · Sep 3

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

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Long COVID Justice @longcovidjustice.org · Sep 2

Following this news - and hoping to see some larger trials studying this!

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...

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Long COVID Justice @longcovidjustice.org · Aug 22

Join us for the webinar! tiny.cc/hcp1024

Pastel rainbow gradient background with wavy folding organic shapes. Large dark navy text says: “Our work is rooted in the knowledge that our many struggles for health, justice, care, and liberation are connected.

COVID-19, like other pandemic viruses including HIV and polio, leads to disability & chronic disease. The impacts of these pandemics hit hardest in already marginalized communities. And we’ve always had to rely on each other when governments & healthcare systems abandoned us.
We’ll never stop fighting for the care we need & deserve.”

Below this, a dark navy text box with orange text says: “HIV Complexities webinar, THURS OCT 16, 6:30–8:00 PM ET, ZOOM. REGISTER: tiny.cc/hcp1024.” In the lower right corner, there are logos for Long COVID Justice + S4HI.

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Long COVID Justice @longcovidjustice.org · Aug 22

ACCESS INFO
• Panel followed by Q&A
• Presentations will be in spoken English w/ ASL interpretation (Note: A future version of this webinar will be presented in Spanish.)
• Zoom auto-captions
• Access doula for support during the event
• Chat will be open

QUESTIONS? [email protected]

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Long COVID Justice @longcovidjustice.org · Aug 22

WEBINAR HOSTS & SUPPORTERS
Hosted by Long COVID Justice @longcovidjustice.org & Strategies for High Impact, with generous support from ViiV Healthcare and Broadway Cares/Equity Fight AIDS (@BroadwayCares) @broadwaycares.bsky.social

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Long COVID Justice @longcovidjustice.org · Aug 22

The impacts of these pandemics hit hardest in already marginalized communities. And we’ve always had to rely on each other when governments and healthcare systems abandoned us. We’ll never stop fighting for the care we need & deserve.

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Long COVID Justice @longcovidjustice.org · Aug 22

At Long COVID Justice, our work is rooted in the knowledge that our many struggles for health, justice, care, and liberation are connected. COVID-19, like other pandemic viruses including HIV and polio, leads to disability and chronic disease.

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Long COVID Justice @longcovidjustice.org · Aug 22

Open to all — with a special invitation to People Living with HIV (PLHIV), healthcare and service providers, advocates, funders, policy makers, and anyone committed to disability justice.

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Long COVID Justice @longcovidjustice.org · Aug 22

This webinar is part of a broader effort to center the voices and experiences of people aging with HIV and living with complex chronic conditions. We invite you to join the conversation and be part of this growing movement!

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Long COVID Justice @longcovidjustice.org · Aug 22

Together, we’ll explore critical issues of access, care, and quality of life for those navigating multiple health conditions—and highlight strategies for systemic change.

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Long COVID Justice @longcovidjustice.org · Aug 22

At the webinar, you’ll hear from community leaders, advocates, and specialists working at the intersection of HIV, chronic illness, and disability justice. Plus, learn about Long COVID Essentials, a practical toolkit for PLHIV and other complex chronic conditions.

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Long COVID Justice @longcovidjustice.org · Aug 22

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 · Aug 19

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!

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 👇

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Long COVID Justice @longcovidjustice.org · Aug 19

Yes, excited to check this out, thank you!

Long COVID Justice @longcovidjustice.org · Aug 8

Connect & get support: Be sure to follow #MEAction (@meact.bsky.social) for lots of resources, action alerts, support groups & more.

Long COVID Justice @longcovidjustice.org · Aug 8

Thank you to writer Kira Signer-Romero (@kikicurious.bsky.social) for writing this infosheet, and to Dr. Alba Azola for providing medical review.

#SevereME #SevereMEDay #DisabilityAwareness #MECFS

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