#longcovidawarenessday
These are public posts tagged with #longcovidawarenessday. You can interact with them if you have an account anywhere in the fediverse.
"Der Verband [Fatigatio e.V.] forderte in einer Mitteilung zum Long Covid Awareness Day mehr spezialisierte Anlaufstellen für Betroffene, effektive Behandlungsstrategien, biomedizinische Forschung und ausreichend soziale Absicherung. Nötig seien zudem Aufklärung auf allen Ebenen und eine entsprechende Kampagne des Bundesgesundheitsministeriums, um Fehldiagnosen, Fehlbehandlungen und Stigmatisierung zu vermeiden."
#LongCovidAwarenessDay
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https://www.sueddeutsche.de/gesundheit/chronisch-krank-wir-sind-nicht-tot-aktionstag-zu-long-covid-dpa.urn-newsml-dpa-com-20090101-250315-930-404421
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 have a much harder time thinking these days. There are times I'm so tired that when I go to talk, I speak gibberish. I forget words all the time. Trying to find the word is like dragging my brain through a glue trap. I have a hard time reading any one thing for very long. I'm glad I can still write coherently, but I don't seem able to write much after supper. I'm also finding that I have an extremely hard time concentrating on much of anything after supper. I'm afraid I'll have to stop signing up for online evening classes because I can barely stay alert during them. It feels an awful lot like when I had mono back in 1989. #LongCovidAwarenessDay #LongCovid #Covid #BrainFog
As far as I know, I've only had COVID once. It was a "mild" case. It didn't feel any worse than a cold and a bit of a sore throat for me. And even though I was fully vaccinated, took Paxlovid right away, and rested very very hard for three months (going to bed whenever I felt even the slightest bit tired), I still ended up with long COVID. I was strong and healthy before. I trained five days a week at the gym and yoga studio and hiked on weekends.
I'm scared shitless about getting COVID again. I'm one of the very few people I know who still masks regularly. #LongCovidAwarenessDay #LongCovid #Covid #MaskUp
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
Because of long COVID, my dad will never walk on the beach again. He can no longer play accordion or guitar because of long COVID.
Because of long COVID, I am no longer a martial artist, dancer, distance runner, or athlete. I no longer feel energetic. I no longer have proper restful sleep. I have aged rapidly. #LongCovidAwarenessDay #LongCovid #ChronicIllness
I should probably post something meaningful and profound for #LongCovidAwarenessDay but I'm too tired after spending every spoon on my son's birthday.
Instead, inspired by someone else inviting people to #SitTogether, I'm just going to suggest we adopt Sit Down by James as our anthem.
"It's hard to carry on
When you feel all alone
Now I've swung back down again
It's worse than it was before"
Sit down next to me.
Sit down in sympathy.
More quotes:
"Check out other organizations that fight for Long COVID day in and day out including:
Black Long COVID Experience, COVID-19 Longhaulers Advocacy Project, Long COVID Families and Patient-led Research Collaborative, among others!
Share information, check out these groups, donate today!
Long COVID research care and treatments matter for everyone."
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#LongCovid #MEcfs #Awareness #ChronicIllness #StopRestPace #LongCovidAwarenessDay
#MEAction has been fighting to protect the Long COVID Advisory Committee at HHS, which was recently dismantled.
In this video, five patient-advocates read an open letter to Health and Human Services Secretary Robert F. Kennedy Jr.
https://www.youtube.com/watch?v=hQn3kqyAT6w
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#LongCovid #MEcfs #Awareness #ChronicIllness #StopRestPace #LongCovidAwarenessDay #USPol
From #MEAction:
Long COVID Awareness Day
March 15
https://www.meaction.net/2025/03/14/long-covid-awareness-day/
"Today is Long COVID Awareness day, and we want to lift up the importance of Long COVID advocacy. We ask you to share this video created by #MEAction volunteers today."
Link to video in next post
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#LongCovid #MEcfs #Awareness #ChronicIllness #StopRestPace #LongCovidAwarenessDay
Today is #LongCovidAwarenessDay.
Tomorrow marks 5 years since I got sick. As a patient, you often need to stay focused in the present, adapting your days and life accordingly, but it does happen that you reflect on how different life looks now compared to then. On days like this, it feels like a good opportunity to share a bit and truly show how this virus affects people, especially to raise awareness about long COVID/post-COVID. So here are some info in bullet points:
• As a freelance musician, it was uncommon for me to be home for more than some weeks at a time – Now it can take weeks before I even get outside my door.
• I used to travel around the world with my double bass – Now it’s myself that I roll around (wheelchair indoors, electric wheelchair outdoors).
• Throughout my life, I have worked in care and taking care of people – Now I am the one who needs home-care and assistance.
• I used to be quite an extreme omnivore (as some can attest to
) – Now I can count the foods/ingredients I can tolerate on both hands.
• Before I got sick, I was classified as overweight according to BMI – Now I struggle to stay just above the underweight line.
• Mobility aids, vasodilator medication, home care, and senior discounts were probably not on my "bucket list" to check off before I turned 40 – But I managed to check them all off.
• I did have some medications before I got COVID, but now I have 15(!) different medications to help me stay relatively stable from symptoms related to my heart, lungs/airways, digestive issues, to counteract allergic reactions, and to assist with mental and physical stamina.
• I rarely needed to rest to get through the days – Now entire days are dedicated to resting and maintaining a routine to manage some simple tasks, things that were previously taken for granted and not even considered strenuous.
• It didn’t go many days without me playing the double bass – After trying a bit in the first half of the year I got sick, I can now count on one hand how many times I’ve even plucked a few notes on it since then.
• Playing concerts and attending colleagues' concerts was a big part of my life, both professionally and socially – The number of concerts I’ve attended in the last 5 years can also be counted on one hand.
• I used to experiment a bit with sinewaves and psychoacoustics – Now it’s the tinnitus in my head that provides the sinewaves.
• I used to find it relatively hard to motivate myself to exercise regularly – Now I would do anything just for my body to respond normally to even the smallest, simplest movement exercises (For those who don’t know, I tried various kinds of "training" in the first 3 years, but despite adjustments and very light exercises while lying down, I eventually had to realize that it just makes me worse).
"You have to be healthy to be able to endure being sick," was a phrase I had heard before I got sick, but I didn’t really understand its meaning until I experienced how you have to fight for everything (And I had no direct "illusions" about how healthcare works, due to experience both professionally and through family).
I want to reiterate that this text is mainly to show how different the worlds then and now are. I am "used" to how my situation looks and live accordingly. I often describe my situation as "fairly stable at a very low level."
I also want to add that I am truly not alone. Fresh statistics from the swedish polling institute SIFO today show that over 280,000 people are estimated to have post-COVID in Sweden. Since it is an umbrella diagnosis, the disease picture varies for many. But the idea that it’s just a bit of "lingering symptoms" is really not true, and I know (unfortunately) several people who have significantly worsened recently, 5 years into their illness, and who have had to be hospitalized lately.
We need to take this more seriously!
Do you feel like you want to do something for us with Post-COVID?
If you live in Sweden, Please consider donating to the Swedish COVID Association (Svenska Covidföreningen), which does an absolutely ENORMOUS job.
Swish: 123 217 81 35
If you live somewhere else, find relevant patient organisations and advocacys in your are to connect with and support.
Do you feel you can do more? Email a political decision-maker, try to influence in various ways. Spread information and knowledge! Etc., etc.
Thank you to those who took the time to read this post! 
#postcovid
#longcovidawarerness
#longcovid
#disabillity
#longtermsickness
I'm pretty into this framing of "new information about silent health damage from every covid infection", even though it is not new or very silent. I hope it helps some covid deniers rejoin the evidence-based world. Nice one, Quirks and Quarks.
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
#LongCovidAwarenessDay #QuirksAndQuarks #CBC #CovidIsNotOver
On this week's episode: polar bear dens, modern sleep…
CBCIt'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.
Hey my lovies, [edit:covid has trashed my brain long…
disabled.social
@admin@detroitriotcity.comOn this #LongCovidAwarenessDay, I stand in solidarity with all Long Covid patients, and those who are working tirelessly to put a spotlight on this debilitating illness.
I was fortunate enough to recover after 2 years of struggling with the disease, but most are not so lucky. Just like in 2020, patients around the world are still fighting for recognition, research, and rehabilitation.
Please, support your local or national Long Covid association
@antiaall3s@chaos.socialI have had #LongCOVID for:
1839 days
or
5 years + 13 days
or
60 months, 13 days
or
44,136 hours
or
2,648,160 min
or
158,889,600 sec
Live in Switzerland
Stop the spread! Wear masks!
It could happen to you.
With everything that we know about this insidious disease, every new case is a crime against public health.
Politicians and physicians, stop ignoring, gaslighting and failing us.
On this Long COVID Awareness Day, my thoughts go out to the millions who have been directly affected, or care for someone who has.
Hope you all have someone to lean on in these particularly difficult times, something that still brings you joy.
Hang in there, we're all in this together! 
#covid #LongCovid #LongCovidAwarenessDay #health #PublicHealth #solidarity