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Reposted by Long Covid Collective

Cassie @cassiemph.bsky.social · 9h

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...

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Long Covid Collective @longcovidcollect.bsky.social · 4h

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.

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.

www.euronews.com

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Long Covid Collective @longcovidcollect.bsky.social · 4h

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

The effect of uninterrupted and interrupted sitting on vascular function in adults with long COVID

Acute prolonged sitting increases blood pressure (BP) and arterial stiffness (AS). Both of these may be mitigated via light physical activity (LPA). Whether long COVID (LC), which partly manifests as...

physoc.onlinelibrary.wiley.com

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Long Covid Collective @longcovidcollect.bsky.social · 5h

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.

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

web.archive.org

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Long Covid Collective @longcovidcollect.bsky.social · 5h

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 · 21h

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.

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...

thesicktimes.org

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Long Covid Collective @longcovidcollect.bsky.social · 21h

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 · 5d

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

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.

www.cidrap.umn.edu

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Long Covid Collective @longcovidcollect.bsky.social · 7d

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.

Understanding the Clinical Characteristics and Timeliness of Diagnosis for Patients Diagnosed With Long Covid: A Retrospective Observational Cohort Study From North West London

Long Covid is a multisystem condition first identified in the Covid‐19 pandemic, characterised by a wide range of symptoms including fatigue, breathlessness and cognitive impairment. Considerable disa...

pmc.ncbi.nlm.nih.gov

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Reposted by Long Covid Collective

zencoffeebreak @zencoffeebreak.bsky.social · 7d

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

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Reposted by Long Covid Collective

Morgan Leigh Davies @mldavies.bsky.social · 7d

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...

Patricia Lockwood explores the depths of Long COVID in the new novel “Will There Ever Be Another You” - The Sick Times

In her new novel Will There Ever Be Another You, which chronicles her experience of the COVID-19 pandemic, literary icon Patricia Lockwood writes, “‘Please don’t write about it,’ people were already b...

thesicktimes.org

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Long Covid Collective @longcovidcollect.bsky.social · 7d

“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

In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms

I would not wish this illness on my worst enemy (if I had one), but sometimes I wish the naysayers could live in our bodies for a few days.. The symptoms are taken from a thread on the Health Rising ...

www.healthrising.org

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Long Covid Collective @longcovidcollect.bsky.social · 7d

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.

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 ...

whn.global

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Long Covid Collective @longcovidcollect.bsky.social · 7d

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.

Research Digest | Issue 120 – Emerge Australia

emerge.org.au

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Long Covid Collective @longcovidcollect.bsky.social · 7d

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.

Retrospective analysis of patients with cardiopulmonary symptoms in the setting of Long COVID syndrome: investigating risk factors

Context Long COVID, a debilitating condition characterized by persistent symptoms following acute Severe Acute Respiratory Syndrome Coronavirus-2 (SARS-CoV-2) infection, continues to pose a significan...

www.degruyterbrill.com

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Long Covid Collective @longcovidcollect.bsky.social · 7d

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.

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.

med.stanford.edu

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Long Covid Collective @longcovidcollect.bsky.social · 7d

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

www.mdpi.com

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Long Covid Collective @longcovidcollect.bsky.social · 7d

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.

CNAG @cnag-eu.bsky.social · 8d

🚀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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Reposted by Long Covid Collective

CNAG @cnag-eu.bsky.social · 8d

🚀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 · 8d

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 · 8d

Hi. We are an Austin, Texas based non-profit run by a small group of people with Long Covid. One of our projects is a photo project focused on women and long Covid. We would love to talk to you and see if we can collaborate with you or, at the very least, help support what you are doing.

Long Covid Collective @longcovidcollect.bsky.social · 8d

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.

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Long Covid Collective @longcovidcollect.bsky.social · 11d

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.

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Long Covid Collective @longcovidcollect.bsky.social · 13d

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?

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Long Covid Collective @longcovidcollect.bsky.social · 14d

Typically they say 3 months, but I knew before them and so did my doctor. I hope it’s not!!

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