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

UK study of 2.7M patients: only 0.33% had a Long COVID code in records. Who got diagnosed varied: women 41–70, Asian/mixed ethnicity, anxiety/asthma history. Diagnosis isn’t just symptoms—it’s bias + coding. No code ≠ no disease.

ur 30s are for getting the hang of adulting, becoming a financially stable, getting long covid and having it all ripped away & moving back in with your parents

Very proud to have reviewed Patricia Lockwood's new novel, WILL THERE EVER BE ANOTHER YOU, for @thesicktimes.org. This is an important book, the first to take the experience of Long COVID seriously. thesicktimes.org/2025/09/30/p...

“My brain feels like a soggy sponge.” “My legs are molasses, my arms are lead.” “Every sound too loud, every light too bright.” This is what chronic illness feels like. Not fatigue on a bad day, but a body that won’t cooperate. #me/cfs #longcovid #fibromyalgia

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.

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.

New study: COPD (~12×) + sleep apnea (~3.6×) raised risk of Long COVID lung/heart symptoms. Needing oxygen during acute COVID also linked. Breathlessness + fatigue were the top complaints. Retrospective data, so not proof of cause—but strong clues where risks cluster.

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.

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

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.

🚀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...

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.

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: [email protected] and write “Job loss” in the subject line.

Nobody plans to wake up with Long Covid. It doesn’t ask permission. It doesn’t care if you’re young or old. One day you wake up and everything is different. That’s why your voice, your awareness, your support matter today—before it happens to someone you love, or to you.

That look when you add up the monthly cost of Long Covid… and then remember you don’t have an income because of Long Covid. What’s the expense that hits you the hardest?

Long COVID folks: what do you spend in an average month on LC? And researchers: links welcome. I’m trying to find a dependable “monthly out-of-pocket” estimate. Think co-pays, meds, PT/OT, devices, gas/parking, childcare, lost time. Thank you!

Living with chronic illness — and especially Long Covid — brings a kind of tired that words don’t capture. Too tired to explain. Too tired to push through. Too tired to be.

Has anyone seen solid research on the average monthly out-of-pocket cost of Long COVID in the U.S.? I’m looking for peer-reviewed work or large surveys. Medical, dental, meds, rehab, travel, parking, supplies. Trying to find all costs incurred because of Long Covid.

New ESC report: – 100M+ w/ long COVID – 5% have cardiac symptoms (chest pain, breathlessness, arrhythmia, fatigue) – Risk ↑ for hospitalized + heart disease patients – Rehab urgently needed but often unavailable “Even now, cardiac long COVID continues to affect quality of life.”

New data: Paxlovid offers very limited protection vs long COVID overall—maybe a bit more for older folks. If you’re using or considering it, it might help reduce risk in high‑risk groups—but not a sure thing for long COVID prevention.

New study links long COVID to: – Heavier periods – Spotting – More bleeding days – Flare-ups of fatigue, PEM, brain fog during parts of the cycle Researchers also found hormone receptor & inflammation changes.

Could a protein called HSP60 help explain why some people never fully recover from COVID? Some researchers think a stress protein called HSP60 may help explain long COVID autoimmunity. It’s early science, not a smoking gun—but it adds to the case that what we’re dealing with is real and biological.

We’re in a COVID surge right now, with an average 998,000 new *daily* infections in the U.S. No one talks about it, because…“Covid is over” (spoiler: it’s not!) Get your vaccine (if you can). Wear a mask. Those of us with #longCOVID have to keep waiting for Novavax. www.today.com/health/coron...

“I just can’t do this anymore.” In chronic illness spaces, we hear this often—and we all understand why. It’s not just being tired. It’s loss after loss: income, mobility, friendships, independence. Hope is heavy when you carry it alone. That’s why LCC exists. #longcovid

For those reading COVID informed / immunocompromised people’s posts abt #LongCOVID & thinking “that’ll never happen to me” or “that’s something for THOSE ppl to worry about” This is a form of #ableism bc you subconsciously / consciously want to distance yourself from disabled / chronically ill ppl

The UK Covid inquiry is finally hearing from young people. Stories range from grief and isolation to resilience — but let’s not gloss over those still sick. Avalyn, 16, is living with long Covid after years of delay and disruption. Resilience shouldn’t be the headline. Ongoing illness should.

Articles debunking myths about long COVID are progress. But they gloss over those still sick years later and act like recovery is the norm. The truth: causes aren’t clear, many don’t recover, and the story’s far from over.

People often think chronic illness is about being tired, having headaches, or needing extra rest. The truth is, it’s a complete upheaval of your life—your body, your work, your friendships, your independence. That’s why this phrase hits so hard: no one really gets it until they get it. #longcovid

You don’t need to have the right answer. You don’t need to fix it. You don’t need to tell us what worked for your neighbor’s cousin. You just need to listen. That’s what support looks like. Unless we ask for advice, please don’t offer it. We’re already carrying enough. #chronicillness #longcovid

One of our favorite messages from last night’s happy hour: “Woke up this morning feeling like I had more friends and I was less isolated. Thank you to all who put the happy hour together! ❤️” This is exactly why we gather. Connection matters. Next happy hour is 10/29/25 & is Halloween themed!

Hope you can join us tonight, September 10th, at 6:00 PM CST for our Zoom Happy Hour! We have lots of fun ideas to discuss for Halloween!! See you soon! #longcovid #lcchappyhour

Hope to see you all for a lighted hearted happy hour on Zoom tonight! Link is in our website calendar! #longcovid #chronicillness #communitysupport

Thanks to everyone who voted! Most said their strongest support comes from fellow sufferers, with family and social media also playing a role. Community makes the biggest difference. 💜 See you at Zoom Happy Hour tonight - link on website, laughter encouraged! #longcovid #chronicillness #mecfs

Where do you find the most support for your chronic illness? Please answer in the comments or take our poll on Instagram. Results will be published tomorrow! #longcovid #mecfs #chronicillness #chronicillnesssupport

New research shows Long COVID isn’t “just fatigue.” Its impact on daily life can be as severe as stroke or Parkinson’s. Worth reading, worth sharing.

Anyone else tell their dog more about what they’re going through with their chronic illness than family or friends? It’s easier to share the hard stuff with my dog. No hype, no sympathy, no fixing. Just acknowledgment and maybe a few head tilts. #longcovid

We’re honored to share that Long Covid Collective has been featured in Voyage Austin’s Rising Stars series! The article highlights our story - from a grassroots support group to a member-led nonprofit focused on healing, connection, and chronic illness support. Link below.

I got up from the couch intending to go to the kitchen but a huge wave of dizziness hit. I outran it & dove onto my bed. Why didn’t I just sit back down?! 🤦🏻‍♀️ Anyone else do this? #longcovid #POTS #chronicillness

Thank you to everyone who attended our first Long Covid Collective happy hour! It was a big success and we can’t wait to do it again next month! 🥂

Happening today! 🎉 Join LCC’s first Zoom Happy Hour — tonight at 6 PM Central. Come meet other long haulers + allies in a casual, no-pressure space. We are even giving out some door prizes for fun! Zoom link is in our calendar on the website. Hope to see you there! #longcovid

The name of your disease shouldn’t decide your dignity. But the difference in how people respond to cancer vs. chronic illness shows just how much it does. A visual breakdown—if you’ve lived this, you’ll feel it. #longcovid #chronicillness

You don’t have to explain pacing. Or why laundry broke you. We get it. That’s the whole point of this happy hour. Just show up—no pressure, no prep. Just people who actually understand. We look forward to meeting you! #longcovid #chronicillness

“This study is the largest systematic look at long COVID in younger children in the US,” “It suggests that this is an illness that children, families, pediatricians and the health care and educational system will be dealing with for a generation.” respiratory-therapy.com/public-healt...

This is a daily mental battle that rarely lets you feel like you’re winning. Have a good weekend & we hope to “meet” some of you next Wednesday at our Zoom happy hour. Community is critical when living with Long Covid. 💙💜

Whether you have Long Covid, or you are a caretaker, or you are an ally, you are welcome to join us next week for a casual hangout on Zoom!

We talk about mourning our former lives, but we don’t talk about how often it’s shoved in our faces. New restaurant? You can’t go. Fave band on tour? Don’t bother checking dates - you’re not going. Need to wash your hair? Not today. You face this every day, all day. That’s strength. #longcovid

Photographer Virginia Hernandez started a Long Covid photo project after documenting her friend Maggie’s life with Long Covid. What began as 1 photo session grew into a powerful act of visibility & advocacy. LCC launched a Creative Network for chronically ill artists. Join us & become a member.

It should be the easiest part of managing this: just take the pills, right? But somehow it feels like climbing a small mountain some days. If someone just handed them to me with a glass of water and said, “here, take these,” I probably would. But when it’s all on me? I weirdly just…don’t. #longcovid

Wild how something as basic as rest can turn into a full-blown mind game. You lie down because your body demands it, then spend the whole time wondering if it’s actually making you weaker. It’s like a tug-of-war between what you need and what you fear. #longcovid #mecfs