Marking Long Covid Awareness Day with @cancovsoc and allies 
At the Vancouver Art Gallery, hundreds of pillow cases were laid out sharing the stories of people with #LongCovid. You can help raise awareness as well - head to https://covidsociety.ca/priorities/long-covid/ to send a letter calling for policy-makers to make Long Covid a priority!
[Photos courtesy of @cleanair604]
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
@broadwaybabyto You shared, “First things first, you can wear a mask.” #longcovidawarenessday, #LongCovid.
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
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 wrote this post on Friendica earlier today. Its about comparing some aspects of life before #Longcovid with how it is now, written in specific Bulletpoints.
#longcovidawarenessDay
#Longcovid
#LongCovidAwareness
#PostCovid
friendica.world/objects/84b6...
Johan Moir (Friendica)
#LongCovidAwarenessDay is now trending across Mastodon
"Live blog: 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 …"
Interview with Dr. Putrino on the long term effects of COVID, and not only in people diagnosed with Long Covid.
“There is more and more literature emerging to show that beyond long COVID, there's also effects that SARS-CoV-2 infection is having on the bodies of the general public that manifest in a way that might be viewed as silent.”
“And the reality of that situation is that this is a virus that has a lot of very unique qualities that specifically cause immune damage to the host.”
“For the longest time in the field of immunology, there was the sort of adage that your immune system, you know, needs to be tested every now and again to stay strong. You got to keep it fighting. That's an old-fashioned idea, you know.”
https://podcasts.apple.com/nl/podcast/quirks-and-quarks/id151485804?i=1000699213418&r=2093
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
Het is vandaag #LongCovidAwarenessDay.
Alles wat je niet wilt weten over #COVID:
- COVID is #airborne: het verspreid zich met name via minuscule zwevende druppeltjes door de lucht. Die kunnen uren in een kamer blijven hangen, en blijven dan besmettelijk. Afstand houden heeft alleen effect op grote druppels, maar niet op deze aerosolen.
- Covid is niet "mild".
- Infectieschade is cumulatief.
- Het maakt je vatbaarder voor andere infecties en ziekten.
- Er is geen genezing voor #longCOVID.
- De #pandemie is nog niet voorbij.
- Het dragen van een FFP2 #masker vermindert de overdracht wel enorm, tot 99%.
- Vaccineren & boosteren blijft nodig. Als je al meermaals besmet bent geraakt zonder long covid te krijgen biedt dat helaas geen enkele garantie voor de volgende keer. Vaccinatie vermindert je kans op long covid met de helft voor meerdere maanden (en het slaat nergens op dat je maar eens in het jaar een prik kunt krijgen)
- Als je covid krijgt is het ongelofelijk belangrijk dat je:
1. Thuis blijft en geen anderen besmet (of alleen met een FFP2 masker anderen opzoekt) - het kan voor mensen met slechte afweer nog steeds dodelijk zijn, of je geliefden levenslang long covid bezorgen.
2. Rustig uitziekt.
We weten nog steeds niet precies waarom de één long covid krijgt en de ander niet, maar van één mechanisme zijn we zeker: als je nog niet goed beter bent en dan toch al over je grenzen gaat, is dat de beste manier om long covid te ontwikkelen. Dit is de reden dat erg veel super gezonde topsporters long covid krijgen.
- Van de mensen die long covid krijgen, ontwikkelt ongeveer 25% de ernstigste vorm, met ME. #ME is een multisysteemziekte die je ook op kunt lopen van bijvoorbeeld Pfeiffer of Q-koorts.
Mensen met ME raken totaal uitgeput van de kleinste prikkels. Het is een soort straf op leven: alles wat leven de moeite waard maakt put je zo ontzettend uit dat je er uren, dagen of zelfs jaren ziek van wordt, alsof je een zware griep hebt.
Ongeveer de helft van de mensen met ME kan nooit meer werken, een kwart is nagenoeg of helemaal bedlegerig.
Dat wil je niet meemaken.
Het gaat bij die laatste, zeer ernstig zieke groep mensen om tienduizenden. Een groot deel van hen wordt nooit meer beter.
Je denkt dat ze niet bestaan omdat je ze niet ziet: ze zitten opgesloten in hun huis, omringd door een vijandige samenleving die hun ziekte het liefst negeert of zelfs agressief ontkent.
Kijken we naar het totaal van mensen met long covid, inclusief mildere vormen (die vaak met veel rust en maanden tot jaren uitzitten, nog wel genezen) dan hebben we het over honderdduizenden Nederlanders.
Nu de overheid heeft besloten om de ernst van covid simpelweg te ontkennen, en de honderdduizenden mensen met long covid af te schepen met een fooi voor een paar long covidklinieken die slechts genoeg financiën hebben om enkele tientallen patiënten te ondersteunen (en een methode voor genezing is er überhaupt niet), is er maar één ding wat je kunt doen.
Probeer zo min mogelijk besmet te raken, en als je toch besmet raakt, besmet dan geen anderen en ziek zo rustig mogelijk uit.
Wat helpt om besmetting te voorkomen is:
- goed aansluitende #FFP2 maskers
- mensen in de buitenlucht ontmoeten in plaats van binnen
- luchtzuivering met HEPA filters voor binnen (je kunt al een mobiel stil apparaat kopen voor in je huiskamer vanaf een euro of 85)
- een tip waar al wel bewijs voor is, maar waar nog meer onderzoek naar moet worden gedaan: bepaalde neussprays met algen blokkeren de receptoren in je neus, waardoor covid maar ook verkoudheid en griep veel minder kans hebben om je te besmetten. In Nederland is dit middel te bestellen onder de merknaam Algovir.
- Hoe meer van deze tips je tegelijkertijd inzet, hoe minder kans je op besmetting hebt.
Op dit moment is het aantal besmettingen in Nederland gelukkig heel laag, maar dat blijft niet zo. Over een paar weken of een maand komt er weer een nieuwe variant, die de getallen omhoog zal jagen. Dat is geen doomsday prediking, maar gewoon hoe evolutie werkt.
Zo lang de wereld niets doet tegen verspreiding, zal covid blijven muteren. Dat elke nieuwe covid variant minder heftig is, is een sprookje. Of een nieuwe variant zwaarder is of niet, is volstrekt random. Het enige wat je zeker weet, is dat als er een nieuwe variant dominant wordt, dat deze besmettelijker is dan de vorige. Anders zou die namelijk niet dominant worden.
Heel, heel veel warmte voor de mensen met long covid. De één heeft slechts maanden last, de ander is levenslang aan huis gebonden, of zelfs aan bed. De één is slechts doodmoe en ruikt bijvoorbeeld niets meer, de ander kan niet eens rechtop gaan zitten zonder flauw te vallen. De één wordt beter, de ander niet.
Juist de ernstigste vormen hebben helaas minder kans om beter te worden, hoewel ik ook mensen ken met heel zware vormen, jarenlang, die daarna toch deels opknapten, soms tijdelijk, maar soms ook (naar het zich laat aanzien) definitief.
Hou vol, lieverds.
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
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.
This is the view from my bed, where I’ve been spending more time than I ever thought I would.
I got #Covid in May 2023, and then again in December 2023 (that time, from being the only masked person in a doctor’s waiting room). I had had all the shots and boosters, and took an antiviral each time I was infected. I’ve tried medication and supplements for my tachycardia, brain fog and neuropathy.
I still have long Covid.
#LongCovidAwarenessDay
@longcovid
