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

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.

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

If you know, you know. 😏 #longcovid #pots #potsawareness

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

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

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

Nearly 10,000 studies on Long COVID since 2020—yet many gaps remain. Most come from the U.S., China, and U.K., focused on symptoms and rehab. Missing: kids, long-term data, and treatment trials. Time for global, inclusive research.

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...

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.

New study: Long Covid doesn’t seem to make blood pressure spikes from sitting worse, but light movement breaks didn’t help either. Two hours of sitting raised BP for everyone, regardless of diagnosis. Physiological Reports, Oct 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.

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

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.

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.

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.

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