Long Covid Collective

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.

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

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.

“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 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.

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

Light lavender-blue background. Brown text reads “Do you want a chronic illness pen pal?” A small illustration of bundled postcards sits in the lower left corner. The Long Covid Collective logo appears in the lower right.

Lavender-blue background with centered brown text explaining a low-pressure, mail-based pen pal program for people living with chronic illness. Text includes “No deadlines. One letter can be enough.” Postcard illustration bottom left, Long Covid Collective logo bottom right.

Lavender-blue background with the heading “What this is / what it’s not” followed by a short bullet list: mail-based not email, letters do not have to be handwritten, no schedules, no obligations, open to chronic illness not diagnosis-specific. Postcard illustration bottom left, Long Covid Collective logo bottom right.

Lavender-blue background with the heading “How to join” and bullet points noting it is run by LCC, open to LCC members, and that details and sign-up are available via the link in bio. Postcard illustration bottom left, Long Covid Collective logo bottom right.

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)

I’m so sorry to hear that! No need for apologies - we get it! Please expect to hear from Virginia Hernandez from our team soon. We are excited about connecting with you! ❤️

It’s beautiful!!

Thank you for making me smile in such a rotten moment.

The most detailed genetic analysis of myalgic encephalomyelitis ever conducted Groundbreaking ME study identifies 250+ genes, links with long COVID, and uncovers new drug repurposing opportunities to advance targeted treatments

New ME/CFS genetics study found 250+ genes and multiple subtypes. Science is finally catching up to the lived reality: this illness isn’t one thing. It never was.

#longcovid #mecfs

A tired-looking Elf on the Shelf doll in a red outfit sits slumped on a beige knitted blanket, leaning against a pillow with a simple black stitched pattern. The elf’s expression looks worn out and overwhelmed. Above the image are the words Chronic Elf on a Shelf. Below the image, text reads He wrapped one present and asked for medical leave. The Long Covid Collective logo appears in the bottom right corner.

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

#longcovid #chronichumor #mecfs

Beige background with an orange bow at the top and a cartoon turkey peeking from the bottom left. Brown text reads “LCC’s Unhelpful & Slightly Unhinged Guide to Surviving Thanksgiving.” Long Covid Collective logo in the bottom right.

Beige background with brown text listing humorous Thanksgiving coping suggestions. Small cartoon of two geese holding pumpkins at the bottom left. Long Covid Collective logo in the bottom right.

Beige background with brown text listing more humorous suggestions. Small cartoon of a corn character holding a drink at the bottom left. Long Covid Collective logo in the bottom right.

Beige background with brown text listing additional humorous suggestions. Small cartoon of an orange pumpkin and red maple leaf holding hands at the bottom left. Long Covid Collective logo in the bottom right.

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

This is how I found it somewhere else. It wasn’t intentional. So sorry!

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.’

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.

Flyer for the Long Covid Collective’s Halloween Happy Hour event. The top shows three illustrated contests: a pumpkin with glasses labeled “Pumpkin Contest,” a brown dog in a skeleton costume labeled “Pet Costume Contest,” and a child in a purple superhero outfit labeled “Live Costume Contest.” The large central text reads, “Are you ready for Halloween Happy Hour tonight?” in warm orange and brown tones. Below, it says, “Send your pumpkin & pet pics by noon today!” followed by “Wednesday 10.29.25 • 6:00 PM • Zoom Link in Bio.” The bottom left corner features a small ghost holding a pumpkin bucket, and the bottom right displays the Long Covid Collective logo in lavender blue. The background is light beige.

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

#longcovid

Graphic titled “Life with POTS” on a beige background with brown text and the Long Covid Collective logo in the bottom right corner. The text reads: “Am I able to take a shower today? If yes, am I able to wash my hair without fainting? Should I do dishes or a load of laundry? But if I shower, will I be able to do the dishes or laundry? I will eat first and then decide. …Well, eating wrecked me and now I can’t do anything.”

If you know, you know. 😏

#longcovid #pots #potsawareness

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.

“Text reads: It takes more strength to rest than to run. Nobody cheers for restraint. Long Covid Collective logo in the bottom right corner.”

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

Promotional graphic for the Long Covid Collective’s Men’s Happy Hour event. The image features two tall glasses of golden beer with foamy tops against a dark brown background. Large white text reads “Cheers O’Clock,” with event details below: “Thursday 10.16.25, 5 PM CST.” Smaller text says, “Just guys & good conversation.” The LCC logo appears in the lower right corner, and “Zoom link in bio” is written at the bottom in yellow.

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

Fingers crossed!!!

Graphic with the heading “Tired & Wired” and two tired cartoon eyes below. Text reads: “My body: exhausted. Also my body: let’s overthink everything until sunrise.” The Long Covid Collective logo appears in the bottom corner.

Graphic with the heading “Tired & Wired” and two tired cartoon eyes below. Text reads: “The sequel to fight or flight. Now streaming every night around 3 AM.” The Long Covid Collective logo appears in the bottom corner.

Graphic with the heading “Tired & Wired” and two tired cartoon eyes below. Text reads: “Warning: side effects include staring at the ceiling, random life reflections, completing all The NY Times games by 3:00 AM, doom scrolling, near total insanity from RLS, and a sudden craving for snacks that you don’t actually have in the house.” The Long Covid Collective logo appears in the bottom corner.

Tired and wired — the unofficial nighttime routine for half the chronic illness community. 💤

Which symptom keeps you up at 3 AM?

#longcovid #me/cfs

Is this from 2023?

The Evolution of Long COVID Research, 2020 to 2025: A Bibliometric Analysis with Implications for Clinical Practice and Policy Background Since 2020, recognition of long COVID (post-acute sequelae of COVID-19) has prompted rapid multidisciplinary research across medicine, public health, psychology, and the social sciences. Th...

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

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.

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...

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

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

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.

A beige background with brown and lavender text that reads: “Long Covid: The Reviews are In! Be sure to read the company responses at the end.” The Long Covid Collective logo appears in the bottom right corner.

A parody of an Amazon product review page titled “Customer Reviews for Long Covid.” It shows a one-star rating out of five, with over 375 million global ratings. Under “Customers say,” fake reviews read: “0 stars if I could,” “Arrived unannounced. Won’t leave,” “Doesn’t match the description (‘mild infection’),” “Tried returning – no refund, zero support,” and “0/10 – would not recommend to a friend, or an enemy.” The Long Covid Collective logo appears in the bottom right corner.

A parody Yelp review page for “Long Covid.” Four one-star reviews appear: • Chloe F. from Kansas City, MO: “Came for the cough, stayed for the identity crisis. My hobbies now include resting and resenting people with energy.” • Treyvon K. from New York, NY: “Good starter illness if you enjoy gaslighting, confusion, and becoming an amateur epidemiologist.” • Tasha J. from WA: “Atmosphere: chaotic. Decor: pill bottles. Staff: dismissive. Vibe: unhinged.” • Brittany S. from Muskogee, OK: “Cute at first! Thought it was a limited edition flu. Now I’m in Season 5 with no plot resolution and the same sweatpants, which no longer fit.” The Long Covid Collective logo appears in the bottom right corner.

A beige background with brown and black text styled like a corporate memo. The heading reads “Long Covid HQ: Responses to Customer Complaints.” Below are sarcastic replies such as: “We’re aware of the ongoing issues and are working hard to fix none of them,” “Hi Brittany! Sorry you’re still waiting for your energy to return. We’ve checked our system, and it was marked as delivered,” “We appreciate your patience as we continue not to understand how any of this works,” “Refunds are not available in your region,” and “Your place in line is currently 4,687,532. Estimated wait time: forever.” The Long Covid Collective logo appears in the bottom right corner.

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

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...

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.

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.

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.

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.

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

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...

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.