In Feb 2020, I went to New York for work. A month later, I could barely walk to the store across the street. Brain fog got progressively worse. It took me almost a year to start being able to walk minimally again and for the fog to clear. I still remember the day I woke up with mental clarity for the first time in 10 months. 3 years to fully walk long distances again with a rehab program.

It's #LongCovidAwarenessDay. I'm mostly functional now. A lot of people aren't. All the local long COVID specialist programs have had their funding dried up. I'm one of the lucky ones who got help, and got better enough to kinda sorta keep going.

What happens to the people who get long COVID now?

(This is a thread now.)

I was an athlete for years. I did fitness competitions, trail running, mountain running, obstacle course races, interprovincial bicycling, hiking, and martial arts. I was a professional dancer, an aerialist, a model, and a LARPer. These days, I spend the vast majority of my time sitting down. I go to the gym a couple of times a week and try to go for walks every day, but if I exert too much or think too hard for too long, I'm exhausted.

This is not the normal feeling of being tired after a grueling workout. It's not a mind over matter thing. It's the kind of fatigue you feel when you're sick or dealing with a nasty injury. #LongCovidAwarenessDay #LongCovid #PostExertionalMalaise #ChronicIllness

It’s International Long Covid Awareness Day, and my latest article looks at the reasons why people believe they don’t know anyone with Long Covid.

We desperately need increased visibility into this debilitating chronic illness so that we can raise awareness and fund treatments, mitigations and cures.

Anyone can get Long Covid. It’s not limited to ‘only the vulnerable’ or those who had a severe initial infection.

This disease does not discriminate. Even people with asymptomatic initial infections have found themselves disabled by Long Covid.

It’s time we start processing the trauma of the pandemic and stop living in denial.

We are in the middle of a mass disabling event, and the longer it takes us to admit that, the more people will be harmed.

Let’s spread the word that the only way to avoid Long Covid is to avoid getting Covid in the first place.

Wear a mask. Stay home when sick. Clean and ventilate the air.

When we all agree to care about the air we share, we can begin to bring about real change.

https://www.disabledginger.com/p/i-dont-know-anyone-with-long-covid

"Live blog: International demonstrations ignite for Long COVID Awareness Day"

https://thesicktimes.org/2025/03/15/international-demonstrations-ignite-for-long-covid-awareness-day/

"Demonstrations for International Long COVID Awareness Day have sparked around the globe. Whether raising awareness about the disease in public or from their homes, people with Long COVID and their allies have raised their voices to demand recognition, research, treatments, support, and prevention of COVID-19 …"

Huge shout out to Bob McDonald for asking David Putrino all the good naive questions about covid on mainstream public radio. Starts at 19:30 or scroll down to that section.

https://www.cbc.ca/radio/quirks/mar-15-the-silent-long-term-effects-of-covid-and-more-1.7483146

Five years into the COVID-19 pandemic, this global public health crisis isn’t winding down, and more people are developing Long COVID each year.
This week for #LongCovidAwarenessDay, we’ve compiled a fact sheet of up-to-date statistics & citations on Long COVID.
Data is one of the most useful tools to strengthen understanding of #LongCovid: https://patientresearchcovid19.com/2025-long-covid-fact-sheet/

For all slides, visit our Instagram:
https://www.instagram.com/patientled/

It's #longCovidAwarenessDay and this toot from a year ago is just as accurate now, sadly.

I have adapted to working around it, but covid left a permanent Injury to my brain. I experience the world and communicate differently now. Everything is harder.

https://disabled.social/@vlrny/111958637055843818

You'd think people would want to know if there was a disease that killed more Americans than all our wars combined and is still killing, that causes long-term illness at yearly rates higher than all cancers combined, that all are at risk for, but that all could take actions to prevent. You'd think they want to protect themselves and their families. You'd think that this would be the #1 world priority. It is for me.

"Long COVID Awareness Day intended to do just that; create awareness through organized actions, many of them put on by disabled people struggling with day-to-day activities. Major media outlets ensured that the top “Long COVID” results on Google that day would be minimizing, unscientific propaganda instead of news about activists, their work, their message, and their illness."

https://www.thegauntlet.news/p/media-celebrated-long-covid-awareness

"‘LONG COVID DOESN’T EXIST’ scream the corporate media. Well, #LongCovidAwarenessDay proved them wrong."

https://www.thecanary.co/uk/analysis/2024/03/16/long-covid-awareness-day-uk/

@longcovid @mecfs

This photo is from a protest at the CDC in 1990 by ACT UP.

The context between HIV/AIDS and Long COVID might be different but the government response is the same.

The “CDC Kills” banner was true in 1990 and it is true in 2024.

https://digitalcollections.library.gsu.edu/digital/collection/ajc/id/14885/

#CovidIsNotOver

#LongCovidAwarenessDay

Just seen a poll on here that indicates that 39% of people don't know anyone with Long Covid.

It's something I've thought about often - I know very few people with Long Covid "in real life" - and *all* of the ones I know aren't people I know personally, rather they're people who are "my account manager's boss's wife" - that kind of thing.

Which makes me wonder - do any of you downplay it or, even, just flat-out lie about it?

Example: I am absolutely lying about the severity of it to my employer, because I was eking out my support payments from them, and needed them to think that I am returning to work at some point.

I also still hope that one day I may be able to return to work, and I don't want any "hm, not sure we should employ him, he has Long Covid" thinking going on (my industry is one of those where everyone knows everyone). This bleeds into some more personal friendships, particularly ones I've made through work.

Does anyone else do this?

For those with milk allergies or want to try something different, I just found a study of a mineral water and banana peel kefir that was studied for HIV treatment. (Includes the recipe/process)

Banana Peel Kefir: An Economic Potent Treatment for HIV-Infected Patients

https://www.researchgate.net/publication/260981931_Banana_Peel_Kefir_An_Economic_Potent_Treatment_for_HIV-Infected_Patients

It is even used as a preventative for HIV. something to add to diet for Covid.

#LongCovid #LongCovidAwarenessDay
#Covid

For #longCovidAwarenessDay, I wanna give a shoutout to the folks who #protest in a #respirator like an #n95 or a #can99. I've seriously seen more masks on activists at rallies than I have in the hospitals.

Thank you for fighting for everyone, while simultaneously protecting everyone.

“To engage with the reality of [the #COVID] crisis, we need to understand how adopting an individualist approach to public health is destroying decades of labor activism, human rights progress, and hard-won protections.” #SARSCoV2 #LongCovidAwarenessDay https://www.thegauntlet.news/p/institutional-covid-denial-has-killed