iiinova — where your digital self keeps evolving

Reposted by Long Covid Collective

Miles W. Griffis @mileswgriffis.bsky.social · 28/08/2026

BREAKING: The Department of Defense is funding a new clinical trials program for Long COVID with an initial grant of $8 million. Called PROBE-PASC, the program will focus on mechanistic trials that will study the disease’s underlying biology in tandem with testing treatments.

A graphic features an aerial photo of the U.S. Pentagon building. Text overlaid on the photo reads, “The Sick Times: Breaking: Department of Defense announces $8 million grant for Long COVID clinical trials”.

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Long Covid Collective @longcovidcollect.bsky.social · 19/08/2026

Join us on Zoom for trivia night! Link is on calendar on our website.

Long Covid Collective virtual Trivia Night graphic with a sunny summer theme. Event is tonight, August 19, 2026, at 6:00 PM CST on Zoom. Zoom link is in bio. The graphic features a blue sky, clouds, sun, green hills, and cartoon pineapple and watermelon characters.

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Long Covid Collective @longcovidcollect.bsky.social · 18/08/2026

I think of ME as a staircase. At the top is where you were before ME. Each step down is a lower baseline. Sometimes you crash, rest and climb back up. Sometimes you don’t. That’s the fear: Will I recover from what I do today, or will I lose another stair? It’s a horrible way to live. #mecfs

Graphic on a periwinkle background reads, “This is the fear we live with every day.” Below is a screenshot of a post from a woman with ME/CFS describing her progression from running a mile in 2022, to losing the ability to stand in 2023, and months later losing the ability to crawl. The post includes a photo of her lying on a couch. Beneath the screenshot, text asks, “Will my baseline lower tomorrow because of what I did today?” Long Covid Collective website appears at the bottom.

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Reposted by Long Covid Collective

victoria @vashetc.blacksky.app · 17/08/2026

In 2022 I went for my regular mile run. It was my very last. In 2023 I took a few steps & sat back down in my rollator. This was my last time standing. A few months later, I crawled to the bathroom & back to bed. That was my last time being able to crawl. The disease I have is called ME/CFS.

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Long Covid Collective @longcovidcollect.bsky.social · 17/08/2026

I found an old photo of myself laughing & immediately thought about how much energy it would take to laugh like that now. I still laugh. But I miss the can’t-breathe, snorting, laughter that happens with people you love. Chronic illness takes a lot from us. We don’t talk enough about laughter.

Graphic on a muted sage green background reads, “Nobody talks about how much less you laugh when you’re chronically ill.” Below is a black-and-white photo of a woman and young boy sitting together on the floor, laughing. Long Covid Collective website appears at the bottom.

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Long Covid Collective @longcovidcollect.bsky.social · 12/08/2026

Imagine having to pay someone to do all the things you used to do. Add more doctor visits & copays. Expensive supplements. Mobility aids. Then you lose your job. And if you get disability, some programs have income and asset limits that can effectively require you to stay poor to keep it. #longcovid

Graphic on a periwinkle background reading, “I don’t recommend getting a chronic illness unless you are independently wealthy.” A small illustrated money tree appears in the lower left, with longcovidcollective.org along the bottom.

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Long Covid Collective @longcovidcollect.bsky.social · 17/03/2026

We showed up, and now it’s part of the global record. This piece captures what Long Covid Awareness Day looked like here and around the world.

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Long Covid Collective @longcovidcollect.bsky.social · 16/03/2026

Continuing our March Monday series of facts about Long Covid we wish were not true. March is Long Covid Awareness Month. #longcovid #chronicillness

Graphic with teal border and Long COVID ribbon. Text reads: “March is Long Covid Awareness Month. Facts about Long Covid we wish were not true: #7. We wish it weren’t true that doctors often dismiss Long Covid as anxiety or deconditioning. Patients are told it’s ‘all in their heads’ while their bodies struggle to regulate heart rate, temperature, and energy. The gaslighting delays care and deepens the suffering.” A small doctor illustration appears on the left. Website at bottom: longcovidcollective.org.

Graphic with teal border and Long COVID ribbon. Text reads: “March is Long Covid Awareness Month. Facts about Long Covid we wish were not true: #8. We wish it weren’t true that normal tests don’t mean normal health. Blood work comes back ‘fine.’ MRIs look ‘clean.’ But you can’t get out of bed. Your heart races when you stand. You can’t find words mid-sentence. Normal tests don’t capture the reality of living with Long Covid.” Medical test illustration labeled “normal” appears on the left. Website at bottom: longcovidcollective.org.

Graphic with teal border and Long COVID ribbon. Text reads: “March is Long Covid Awareness Month. Facts about Long Covid we wish were not true: #9. We wish it weren’t true that there are still no approved treatments. Millions have been sick for years. Millions more join them every month. Yet safe, effective treatments remain out of reach. Research is underfunded. Options are limited. Patients are left to experiment on their own.” Pill bottle illustration appears on the left. Website at bottom: longcovidcollective.org.

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Long Covid Collective @longcovidcollect.bsky.social · 13/03/2026

Yesterday, the City of Austin officially proclaimed March 15 as Long Covid Awareness Day. This recognition is meaningful to the members of our organization and to all chronic illness survivors. Listening to our Chair, Rachel Madison, speaking was a proud moment. 🩵

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Long Covid Collective @longcovidcollect.bsky.social · 09/03/2026

The City of Austin will officially proclaim Long Covid Awareness Day on March 12th! Join us at 9:00 AM at City Hall or watch live through the link on the LCC calendar. Wear teal to show support. Teal ribbon pins will be available. Presented with our partners at Clear the Air ATX.

Graphic announcing that the City of Austin proclaims Long Covid Awareness Day. The proclamation will take place Thursday, March 12 at 9:00 AM CST. The graphic encourages people to wear teal to show support and notes that teal ribbon pins will be available. It also says the event can be watched live through a link on the Long Covid Collective calendar. Logos for Long Covid Collective and Clear the Air ATX appear at the bottom.

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Long Covid Collective @longcovidcollect.bsky.social · 09/03/2026

More facts about Long Covid we wish were not true. March is Long Covid Awareness Month. Learn more at longcovidcollective.org #longcovidawareness

Graphic for Long Covid Awareness Month titled “Facts about Long Covid we wish were not true: #4.” The text states that being in peak physical condition does not protect someone from Long Covid. It explainsthat professional runners, collegiate swimmers, and other athletes have been sidelined, and that formerly active people may experience post-exertional malaise, where even a short walk can trigger a debilitating crash. A teal and gray Long Covid awareness ribbon appears at the top, and a silhouette of a volleyball player appears on the left. The website longcovidcollective.org appears at the bottom.

Graphic for Long Covid Awareness Month titled “Facts about Long Covid we wish were not true: #5.” The text explains that invisible illness is often treated like an imaginary one. It notes that someone can appear healthy while experiencing severe symptoms such as crushing fatigue, neuroinflammation, and heart rate instability that are not visible from the outside but are real and disabling. A teal and gray Long Covid awareness ribbon appears at the top and theater masks appear on the left. The website longcovidcollective.org appears at the bottom.

Graphic for Long Covid Awareness Month titled “Facts about Long Covid we wish were not true: #6.” The text explains that past COVID infections do not protect someone from Long Covid. Each new infection carries a risk of developing Long Covid for the first time or worsening existing symptoms. Dice appear on the left to represent risk. A teal and gray Long Covid awareness ribbon appears at the top and the website longcovidcollective.org appears at the bottom.

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Long Covid Collective @longcovidcollect.bsky.social · 05/03/2026

The City Austin will proclaim Long Covid Awareness Day on March 12 at City Hall. Join us as this moment is recognized. Wear teal to show support. We will have teal ribbons for anyone who wants one. Presented by Long Covid Collective + Clean the Air ATX

Event poster with a soft beige background. Text reads: “Join us at City Hall for Austin’s First Long Covid Awareness Day Proclamation.” Below are the event details: Thursday, March 12, 9:00 AM, Media Room, 301 W. 2nd Street, Austin, Texas. A small badge in the corner says “Join Us.” At the bottom the text reads “Presented by Long Covid Collective + Clean the Air ATX” with both organization logos and a teal awareness ribbon symbol.

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Long Covid Collective @longcovidcollect.bsky.social · 04/03/2026

“Pushing through” fatigue can permanently disable you. Many of us were taught to work harder when we feel tired. With Long Covid, that instinct can make the illness worse. Pushing through does not lead to recovery. It can lead to months or years of setback. March is Long Covid Awareness Month.

Graphic for Long Covid Awareness Month. At the top is a teal and gray ribbon labeled Long Covid and the text “March is Long Covid Awareness Month.” The main heading reads “Things I Wish I Had Known Before Getting Long Covid #1.” The graphic states: “I wish I’d known that ‘pushing through’ fatigue could permanently disable me.” Below it explains that our culture teaches hard work pays off and rest is weakness, but with Long Covid pushing through does not lead to recovery and can lead to months or years of setback. The Long Covid Collective website appears at the bottom.

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Long Covid Collective @longcovidcollect.bsky.social · 02/03/2026

March is Long COVID Awareness Month. Every Monday, we’re sharing 3 facts about Long COVID we wish weren’t true. Follow along each Monday in March. #longcovid #chronicillness #mecfs #longcovidawareness

Graphic with teal border and Long COVID awareness ribbon. Text reads: “March is Long Covid Awareness Month. Facts about Long Covid we wish were not true: #1. We wish it weren’t true that you don’t have to be ‘high-risk’ to get it. A marathon runner, a teenager, your healthy colleague. Long COVID doesn’t discriminate based on your pre-COVID health or fitness.” A silhouette of a runner appears on the left. Website listed: www.longcovidcollective.org.

Graphic with teal border and Long COVID awareness ribbon. Text reads: “Facts about Long Covid we wish were not true: #2. We wish it weren’t true that even a mild infection can lead to severe long-term illness. You can have a few days of cold-like symptoms and then months or years of crushing fatigue, brain fog, and dysautonomia. Severity of the acute illness does not predict likelihood of Long Covid.” A cartoon virus appears on the left. Website listed: www.longcovidcollective.org.

Graphic with teal border and Long COVID awareness ribbon. Text reads: “Facts about Long Covid we wish were not true: #3. We wish it weren’t true that pushing through can make you permanently disabled. With many illnesses, rest helps and pushing is brave. With Long COVID, pushing through symptoms can trigger permanent setbacks. Post-exertional malaise (PEM) is real: one good day of overdoing it can leave you bedbound for weeks or permanently disabled.” A wilted plant appears on the left. Website listed: www.longcovidcollective.org.

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Long Covid Collective @longcovidcollect.bsky.social · 09/02/2026

Do you want a chronic illness Pen Pal? We started a pen pal program we are so excited about! The program is international and open to anyone with a chronic illness. Finally you can get mail that isn’t a medical invoice! Sign up on our website. 💙(www.longcovidcollective.org)

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Long Covid Collective @longcovidcollect.bsky.social · 04/12/2025

The Chronic Elf tried to be festive. His body said try again next year. Anyone relate? #longcovid #chronichumor #mecfs

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Long Covid Collective @longcovidcollect.bsky.social · 24/11/2025

Navigating Thanksgiving with a chronic illness can be a challenge. Here’s some snark to ease the pain! Two more pages are on our other accounts. Hope everyone has a good week! #longcovid

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Long Covid Collective @longcovidcollect.bsky.social · 15/11/2025

Here’s some encouraging news for our community: in Germany, the government has launched a ‘National Decade Against Post-Infectious Diseases’ (2026-2036), pledging about €500 million of funding to study post-viral illnesses including Long COVID and ME/CFS.

A dark navy graphic with bright pink and white text reading: ‘GOOD NEWS: Germany has announced a landmark National Decade for Post-Infectious Disease, investing €500 million over ten years to accelerate ME/CFS and Long Covid research. A long-overdue recognition and a real step toward answers, treatments, and justice. Health Minister Lauterbach describes it as one of the biggest health policy challenges of the 21st century. They aim to establish cures by the 2030s.’

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Long Covid Collective @longcovidcollect.bsky.social · 29/10/2025

See you tonight for LCC’s spooky Happy Hour! 👻 #longcovid

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Long Covid Collective @longcovidcollect.bsky.social · 16/10/2025

We celebrate those who push through. But some of us are fighting to not push — because rest is survival. It takes more strength to stay still than to run. #longcovid

Two photos side by side compare strength. The top shows Rocky running up the steps surrounded by people, labeled ‘Healthy person.’ The bottom shows a person lying exhausted on a couch, labeled ‘Chronically ill.’ The caption reads: Both photos represent strength.”

Top image shows a person running outdoors in cold weather with a dog, captioned ‘We cheer for the ones who push through.’ Bottom image shows a man lying back on a couch wearing headphones, captioned ‘But strength isn’t always about pushing.’”

Text slide with message explaining that people with chronic illness are forced to rest for months or years. It contrasts this with the misconception that rest is easy, describing how rest is necessary for survival and that pushing through will make them worse.

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Long Covid Collective @longcovidcollect.bsky.social · 15/10/2025

LCC Men’s Happy Hour tomorrow, Thursday, October 16th at 5:00 CST. No agenda - just a chance for the guys to talk. Zoom link is on the website calendar. #longcovid

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Long Covid Collective @longcovidcollect.bsky.social · 13/10/2025

Tired and wired — the unofficial nighttime routine for half the chronic illness community. 💤 Which symptom keeps you up at 3 AM? #longcovid #me/cfs

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Reposted by Long Covid Collective

Cassie @cassiemph.bsky.social · 08/10/2025

Also reminder that these findings are matching what is found in adults. The biggest names in Covid epidemiology have been telling us for years that the risk of long COVID accumulates, we are more likely to experience it after each subsequent infection www.phcc.org.nz/briefing/lon...

phcc.org.nz

Long Covid Update – a threat that continues to demand a strong response

Five years of experience with Covid-19 has provided substantial evolving evidence on Long Covid, which is reviewed here to assess risk and the necessary proportionate prevention-and-management respons...

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Long Covid Collective @longcovidcollect.bsky.social · 08/10/2025

Scientists in Japan found measurable brain changes in people with Long Covid who experience brain fog — real biological proof behind a symptom many live with daily. Changes in glutamate and AMPA receptor activity were seen on scans, offering new clues for diagnosis and treatment.

euronews.com

Scientists uncover biological cause of Long COVID brain fog

New research offers what scientists describe as the first biological evidence of Long COVID brain fog.

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Long Covid Collective @longcovidcollect.bsky.social · 08/10/2025

Researchers in the UK have developed a blood test that may finally help diagnose ME/CFS — a condition closely tied to Long Covid. Early results look promising with about 92% accuracy in detecting cases. It’s still in early stages, but it’s a hopeful step toward real diagnostics.

web.archive.org

First blood test to diagnose chronic fatigue syndrome

Researchers at the University of East Anglia have developed a way of identifying genetic markers for myalgic encephalomyelitis

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Long Covid Collective @longcovidcollect.bsky.social · 08/10/2025

Long Covid: The reviews are in. Spoiler—none of them are good! Scroll through for the “official” company responses. Full post on IG & FB. #chronicillnesshumor #longcovid #parody

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Long Covid Collective @longcovidcollect.bsky.social · 07/10/2025

Hypermobility shows up in a subset of people with Long COVID. It may guide care for some, but causation is unproven. New hEDS/HSD criteria are due in 2026. If this fits your experience, ask for careful eval and clear documentation of how symptoms limit daily life. We’ll keep tracking the data.

thesicktimes.org

Getting diagnosed with hypermobility can help some people with Long COVID. Upcoming guidelines may make it easier. - The Sick Times

Current diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hEDS), a common comorbidity of Long COVID, are restrictive. The Ehlers-Danlos Society is developing new hEDS criteria that will be r...

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Long Covid Collective @longcovidcollect.bsky.social · 07/10/2025

LCC made the news! KVUE featured our long Covid information booth at the Bob Bullock museum on Sunday. It was great to be able to interact with the public and provide much needed information.

A young woman stands in front of a camera giving an interview inside a building lobby with marble floors and tall stone columns. She wears a tan shirt, jeans, and white sneakers, speaking confidently to an interviewer who is partially visible. Behind her are tables covered in blue cloths with posters and displays promoting community and health-related information.

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Long Covid Collective @longcovidcollect.bsky.social · 02/10/2025

New study: older adults with COVID had a higher risk of vascular dementia — but when compared to other serious respiratory illnesses, the extra risk disappeared. Association, not proof, and follow-up was short. Still, it’s a signal worth watching. #longcovid

cidrap.umn.edu

COVID-19 infection associated with increased risk of new-onset vascular dementia in older adults

Prior COVID-19 infection was associated with a 41% increased risk of all-cause dementia.

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Long Covid Collective @longcovidcollect.bsky.social · 30/09/2025

6 years in, Long COVID still lacks awareness. 📌 1 in 5 U.S. adults have had it—higher than diabetes. 📌 Millions disabled, few recoveries. 📌 No approved treatments. 📌 Only sure prevention: don’t get COVID. Not rare. Not gone. Still growing.

whn.global

Seven Things to Know About Long COVID - WHN

This post is part of a new blog series focusing on long COVID. See part 2. After nearly six years of living with the SARS-CoV-2 virus, everyone knows about COVID-19. However, public awareness of long ...

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Long Covid Collective @longcovidcollect.bsky.social · 30/09/2025

New research roundup (Emerge Australia) HERV patterns differ in ME/CFS vs fibro. Gut “leakiness” + immune signals tied to post-COVID fatigue. EBV study: some develop ME/CFS, with early biomarker clues. DecodeME finds genetic variants linked to ME/CFS risk. Early days, but more puzzle pieces.

emerge.org.au

Research Digest | Issue 120 – Emerge Australia

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Long Covid Collective @longcovidcollect.bsky.social · 30/09/2025

Stanford’s 2025 Long COVID symposium shows both hope + gaps. 👃 Smell retraining + a PRP trial show promise. 🧠 Headaches: CGRP migraine meds may help some. 🦠 Gut issues + vascular immune dysfunction (NETs, platelets) under study. No single fix, no specialty “owns” it yet. Care must be whole-person.

med.stanford.edu

From Smell Loss to Brain Fog: Unpacking the Long COVID Puzzle

Highlights from Stanford’s 2025 Long COVID symposium reveal new insights on smell loss, migraines, gut health, blood changes, and whole-person care.

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Long Covid Collective @longcovidcollect.bsky.social · 30/09/2025

New Spain study: 3+ COVID infections = 3–10× higher long COVID rates. Nearly half of respondents needed sick leave. Clotting events rose 2020–25, esp. in older adults. Numbers may be undercounted (diagnoses missed, survey bias), but the message is clear: reinfections raise risk. #longcovid

mdpi.com

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Long Covid Collective @longcovidcollect.bsky.social · 30/09/2025

New research shows healthy muscle exposed to Long COVID or ME/CFS blood gets weaker in just 48 hrs. At first muscle fights back, boosting energy + protein building. But after days it breaks down, mitochondria fragment, and force drops further. Not a cure yet, but a roadmap for recovery research.

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Reposted by Long Covid Collective

CNAG @cnag-eu.bsky.social · 30/09/2025

🚀New advances in Chronic Fatigue Syndrome & Long Covid-19! Led by @ibecbarcelona.eu, with our contribution (@annaesteveco.bsky.social), the study shows that skeletal muscle progresses through a hypermetabolic state, leading to muscle & mitochondrial deterioration iopscience.iop.org/article/10.1...

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Long Covid Collective @longcovidcollect.bsky.social · 30/09/2025

Free day at the Bullock Museum this Sunday! 🎉 It’s H-E-B Free First Sunday plus the Texas Archeology Fair with hands-on history, demos, and more. While you’re exploring, stop by the Long Covid Collective booth to meet us and learn how you can support people reclaiming their lives after Long Covid.

Digital flyer with beige background headed “The Texas Archeology Fair at the Bullock Museum.” Text describes the event as part of Texas Archeology Month, featuring activities, exhibits, and walking tours. A large bold heading “ACTIVITIES” introduces a bulleted list: flintknapping and spear-throwing demos, clay pinch pots, museum activity booths with archeologists and tribal representatives, and a 2 p.m. screening of The Stones Are Speaking. A reminder at the bottom in blue encourages visitors to stop by the Long Covid Collective booth.

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Long Covid Collective @longcovidcollect.bsky.social · 29/09/2025

Have you lost your job because of Long Covid? We’re creating a powerful collage to show the impact of job loss in our community. If this is your story, we’d love to include you. 📸 Email your photo now to: longcovidcollective@gmail.com and write “Job loss” in the subject line.

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