Oof, I'm right there with you. Luckily I don't get the migraines, but my stamina is shot to shit, and if I exert myself too hard (sometimes that's doing something as simple as showering) I'll become cripplingly exhausted for several days. I tested positive for COVID one (1) time. In 2021. 🫠

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We took in my Brother in Law. Some days he cannot even shower. Sits or lays in his bedroom. I cannot imagine what either of you are going through. He is in his mid sixties however. At thirty six, my heart goes out. Let us hope they find a cure soon.

Disability is fucking expensive, so do yourself the favor of masking up

Waiting for some super smart progressive politician to run on a HEPA/CR box in every daycare and classroom

6 years ago today I went on my last run (pic left) — today I’m 36 and I’ve spent my entire 30’s with #LongCovid struggling to walk up and down the block, or work more than 1-2 hours a day. Heres 4 things I never thought I’d lose at this age:

“Lots of us are tired of hearing about it… but we keep talking about it because we know how devastating it can be, we’ve met people whose lives are forever changed for the worse because of dating COVID-19, and lots of people… with #LongCovid say they wish they had known how bad it could be.”

Now at 2 million downloads and the 4th highest @altmetric.com rated peer-reviewed paper in the past 3+ years Thanks to @ahandvanish.bsky.social @lisamccorkell.bsky.social @julialmv.bsky.social www.nature.com/articles/s41...

“Lots of us are tired of hearing about it… but we keep talking about it because we know how devastating it can be, we’ve met people whose lives are forever changed for the worse because of dating COVID-19, and lots of people… with #LongCovid say they wish they had known how bad it could be.”

In other words, we’re know you’re tired of hearing about COVID-19. We’re tired of hearing about it too. But ignoring it does not help it to go away, so please continue to take protect your health.

This week marked the anniversary of the start of the COVID-19 pandemic. We’ve summarized our thoughts a bit below, but tl;dr: Unfortunately, COVID-19 is still with us, & although we may be tired of hearing about it, it’s extremely important to continue to take steps to protect ourselves & others.

Most people act like Long Covid could never happen to them. But what makes them think they’re built stronger than this girl was?!? The vanity and delusion.

For those taken in by minimizers who deny that addressing #LongCovidKids is a moral imperative: bsky.app/profile/elho...

Three years for me now. I consider myself lucky. I can nearly always get out of bed and most days I can wash, dress, and feed myself. I can do some work some days and I’ve found work interesting enough to feel valuable and stop me going quite mad. But I barely leave the house & depend on …

Long covid and disability justice seems to not even be remotely on the radar of progressives and leftists:

Can’t quite get this quote out of my head… much like I can’t quite get this virus out of my body.

This is an interesting question. Why do progressives seem to not care?

Please mask, if you're on the fence. I don't want this to happen to anyone I care about. It's already happened to a few, through no fault of their own. It's so infuriating that we could have beaten this with minimal effort, and instead, we have a pervasive disease that lurks and maims and kills.

Mountain climber with LC "I want to share everything I can with others about my story. If there were a fairy that said "30/100 of the M&Ms in that bag are shit pebbles" I wouldn't have even stuck my hand in the bag. I'm the fairy. Avoid COVID. "

#LongCOVIDAwarenessDay Vancouver! Long COVID continues to break our hearts, over 6 years on. Thank you organizers and @cancovsoc.bsky.social for marking today with rallies in 4 different cities across Canada @longcovidcan-co.bsky.social

For context, the hardest climbs in climbing gyms are usually around V7. This rock climber was climbing grades I cannot dream of in 2025 right up to her 3rd covid infection that developed into long-term disabilities. #LongCovidAwarenessDay

That really is the most heartbreaking thing. I miss having the stamina to sing longer than a few minutes, but I REALLY miss thinking people would care about me if I wasn’t in front of them making music and having ideas and creating things they liked.

I feel this so hard. I loved line dancing. For 35 years. It was my social life and no matter what else was going on, I always had dancing to lift me up. I also loved the two gyms I worked out at. I haven't danced for six years. I can barely walk to the corner and back, let alone go to the gym.

For #LongCovidAwarenessDay — I know so many of us would love to see progressives start to be consistent in their progressive values: “Governments modelling abandonment.. in time of crisis signal support to fascist, eugenicist & Nazi logic.. pandemics can give rise to fascist political economies”

PEM is one of the worst symptoms you can end up with. You go from athletic, active, to being in constant danger that walking just a few extra feet will knock you on your rear for a week. Keep pushing and you go from walking to a rollerator or wheelchair. 1/

NEW: People with Long COVID have waited 6 months for the HSS to release more info on their Long COVID plan. Today they released an extremely bare bones website. Much of the site is "coming soon"... after half a year. www.hhs.gov/longcovid/in...

Covid activists don't ask people to mask because we're wokescolds or purity testing. We are genuinely trying to save y'all from a life of disability. From losing everything you thought mattered most to you. We are trying to help y'all help yourselves before it's too late ❤️.

Excellent #LongCovid Fact Sheet from @patientled.bsky.social. While most people look the other way, COVID19 continues to wreak havoc on life and limb. Stop the spread of SARS2. Reinfection increases Long Covid risk. Protect yourselves and others. #LongCovidAwareness #LongCovidAwarenessDay

“You’re not just becoming disabled,” said Elle Seibert, 31, who has dealt with debilitating fatigue and cardiac symptoms since 2020. “You’re realizing how easily society at large and people in your life will abandon you when you cannot offer them things.” www.latimes.com/science/stor...

😭

“COVID-19 really has had a profound impact in terms of long-lasting symptoms that affect all kinds of different parts of the body, at a much higher rate than we usually see from other viruses,”

And we can take this moment, where we start to notice Long Covid is a still-growing problem from a still-active pandemic and say, “What can we do to reverse this trend?” We can ask, “Who else have we excluded & how can we be more inclusive?” Or we can just yell “I have to live my life!” & ignore it.

I don't have anything prepared for #LongCOVID Awareness Day because I am so lethargic. I can type right now, but it's very tiring, so I won't be able to for much longer. This is my life with Long COVID.

Today is Long COVID awareness day. What does the data show about Long COVID in 2026? How common is it, how bad is it, what does it consist in? The Patient-Led Research Collaborative has put together a fact sheet based on the most recent data. Cannot recommend highly enough!

On #LongCovidAwarenessDay — I think the most important thing to understand is that it’s still happening: “I got COVID for a 3rd time in 2025 (I'm vaxed, boosted & took paxlovid)... Boom #LongCovid. Can't climb due to PEM. I haven't climbed in almost a year.” “COVID… is still causing disability.“

Today, March 15, is #LongCovidAwarenessDay. LongCovid is a constellation of postviral disease states that occur after ~1/5 SARS2 infections, a likelihood that rises with each subsequent infection. It can manifest differently in each person &there’s a lot more to know. 1/4 www.tiktok.com/t/ZT2b9Mv6K/

My sibling with long covid has now been bedridden for 18 months. They eat a liquid diet, can't read, listen to music, look at screens... With medication, they have improved a little, so they can speak for a few minutes each day. Masks work, please wear one.

It’s #LongCovidAwareness Day. Especially to non/not yet affected folks, please take 3 minutes to watch & sit with what #LongCovid stole from us. Then multiply each of these losses by millions of people around the world 💔

Oooof

“You’re not just becoming disabled, you’re realizing how easily society at large and people in your life will abandon you when you cannot offer them things.” ⬇️⬇️⬇️ #LongCovid #LongCovidAwareness #LongCovidHeartbeats

It takes relatively little disability to make the rest of the world consider you “disposable.” They won’t say it out loud, but their actions are clear. #DisabilityJustice #LongCovid

You may want it to be over. You’re being told it’s over. Everyone is acting as if it’s over. You may ridicule people who are cautious and not “over it.” But IT IS NOT OVER. Please listen to the people whose lives have been upended by ME/CFS: You do NOT want even a mild version of this.

there's a persistent myth that if there is a disaster and we acknowledge the disaster is real, people will panic and act out and destroy society with fear. the plague destroys people even when no one shows any fear of it.

It’s been a while since I talked about it, so just a reminder that a scant few years before fascism destroyed my career in research, Long Covid destroyed my career as a social worker and pushed me to retire from domming too. I could not be on my feet for more than a few minutes.

My ER RN daughter told me in Nov 2020 that they were seeing a lot of previously healthy patients who'd had mild COVID return w pulmonary embolisms. Their heart attacks & strokes were not counted as C deaths. Most were in their 30s-40s. They knew this then. There's even more data now.

Amazing how we’ve collectively just decided COVID isn’t a big deal anymore

Translations will be available soon. If you’d like to translate this to another language, please email us at [email protected]! 16/

We hope this Fact Sheet will be helpful to the community, and send the community our love and solidarity during this month! Find an accessible text-only version here: patientresearchcovid19.com/2026-long-co... /15

Finally, the vast majority of the public (76%) and physicians (82%) believe #LongCOVID needs more research funding! 14/