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Long COVID Justice

@longcovidjustice.org

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

434 Posts4881 Follower1087 Folgt
The Sick Times@thesicktimes.org · 2mo ago

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.
Long COVID Justice@longcovidjustice.org · 2mo ago

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

emily fraser 🌿🐌✨@emilyesfraser.bsky.social · 4mo ago

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...

New/Mode | Make your voice impossible to ignore

win.newmode.net

Long COVID Campaign | www.longcovidcampaign.org@lccampaign.bsky.social · 4mo ago

📣U.S. Action Item: #pwLC #POTS #pwME #NEISVoid we need your help! Will you contact your Senators & ask them to sign on to the FY27 Senate “Dear Colleague” Letter for over $210 million to #FundLongCOVID in 2027 Appropriations using our EASY low-spoons call/email tool?🧵

Drawn image of the U.S. Capitol dome, with the words underneath: Long COVID patients have waited too long for TESTS, TRIALS & TREATMENTS. #FundLongCOVID
s. e. smith@sesmith.lol · 4mo ago

Cool cool so you have to meet means testing to retain your Medicaid coverage, but offices are understaffed so the people who administer that means testing are hopelessly behind.

States Face Another Challenge With Medicaid Work Rules: Staffing Shortages - KFF Health News

Some states already don’t have enough staff to quickly process Medicaid applications and answer enrollees’ phone calls. Researchers say they may not be prepared to handle new Medicaid work rules, pred...

kffhealthnews.org

Long COVID Justice@longcovidjustice.org · 5mo ago

Thanks everyone who supported this campaign! Shout out to @cleanairla.bsky.social for spearheading these efforts 💜

Bright D Limm 임대중@bdlimm.myatproto.social · 5mo ago

#ShareGoodNewsToo: Los Angeles will recognize Long Covid Awareness Day (Mar 15). City Hall will be the color teal around the time of the Academy Awards! 🙏 to the orgs leading the effort, incl. @cleanairla.bsky.social, @togetherwemask.bsky.social, @longcovidjustice.org, and @patientled.bsky.social.

Long COVID Justice@longcovidjustice.org · 6mo ago

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!

ICE Makes Me Sick—Fund Healthcare, Not Violence!

Tell Congress to stop bankrolling ICE violence while slashing our healthcare and home care.

makesmesick.org

#MEAction Network@meactnet.bsky.social · 6mo ago

A quick update to our recent call to action to demand that Congress stop bankrolling ICE violence while slashing our healthcare and home care. Contact your Representative in the House TODAY to let them know you oppose more money to ICE. actionnetwork.org/letters/ice-... @longcovidjustice.org

Bright orange and yellow text-based graphic with a megaphone in bottom corner. And outline of Congress building in corner. Text: Important update Contact you members of Congress now! The House of Representatives will be voting on the budget soon. Use our tools to contact Congress to demand they stop bankrolling ICE violence while slashing our healthcare and home care.
Long COVID Justice@longcovidjustice.org · 8mo ago

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.
Long COVID Justice@longcovidjustice.org · 9mo ago

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.
Anthony Michael Kreis@anthonymkreis.bsky.social · 9mo ago

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.

Elizabeth Jacobs, PhD@elizabethjacobs.bsky.social · 9mo ago

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

theguardian.com