(she/her/they) Hey frens! Zay's in the ER again, complications due to the deadly combo of Long Covid and chronic houselessness. Please, while he's being treated can we pull together enough for a couple weeks?
Every bit counts! And as soon as possible!
Recent searches
Search options
#LongCovid
390 posts148 participants9 posts today
Five years of Long Covid
Links:
NBC News
https://www.nbcnews.com/health/health-news/5-years-later-long-covid-still-medical-mystery-scientists-learned-rcna195608
US News and World Report:
https://www.usnews.com/opinion/articles/2025-03-10/covid-pandemic-vaccines-measles
Rolling Stone:
https://www.rollingstone.com/culture/culture-features/long-covid-five-years-1235296375/
https://www.s4me.info/threads/news-from-the-usa-united-states-of-america.20771/page-36#post-593840
From the latest Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19
On Hello Computer newsletter this week: "Avoiding catching Covid-19 was exhausting, but not as exhausting as living with Long Covid."
Read and sign up: https://pete.news/hellocomputer/my-one-year-anniversary-of-long-covid/
pete.news · My one year anniversary of Long CovidAvoiding catching Covid-19 was exhausting, but not as exhausting as living with Long Covid.
Continued thread
2/
Longer version of that extract:
"ME/CFS and PCC have similar, profound impacts on HRQoL [health-related quality of life] that warrant access to multidisciplinary disability and social support services."
#PASC #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs @longcovid @covid19 @novid@chirp.social @novid@a.gup.pe @auscovid19 #LongCovid
I have arrived back in Cheshire after three flights. Apart of the lack of sleep I am okay. I didn't sleep till 6:45am Canadian time and then only for 1.5h.
I was very glad to have my noise cancelling headphones though I eventually switched to ear plugs as they keep automatically switching off.
I never used to think planes were so loud! It's one of those things about long covid that has stuck with me even as I feel better in many other ways.
Oh, I'm on the front page of Rolling Stone right now, kinda. Guess I picked a bad moment to look at my phone. Don't be me. Don't look at your phone lol.
Photo is from #MEAction protest at White House, Sept. 2022, right after Biden said the pandemic was over.
Thanks @justyourluck for posting this.
https://www.rollingstone.com/culture/culture-features/long-covid-five-years-1235296375/
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]
Continued thread
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
Continued thread
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
Today is international #LongCovid Awareness Day
Check this canadian interview with a Mount Sinai (NY) chronic disease specialist. Up to one in five people with COVID-19 develop LONG COVID, meaning three months after having the disease they still do not recover their full abilities.
The specialist affirms that each reinfection, even moderate, of COVID-19 subtracts between 2-6% of IQ.
LONG COVID is a disease that causes systemic damage, especially to the immune system, causing T-cell exhaustion and triggering latent diseases or exposing the body to new pathogens from which it would have been able to defend itself before. Worth a listen:
https://www.cbc.ca/player/play/audio/9.6685208
#CovidLong #COVID19 #CovidIsNotOver #COVIDisAirborne
#CovidIsntOver
#ImmuneSystem #ImmuneDysfunction
#autoimmune #TCell
#chronicillness
#ChronicIllnesses
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
Replied to Broadwaybabyto
@broadwaybabyto You shared, “First things first, you can wear a mask.” #longcovidawarenessday, #LongCovid.
It blindsides you.
Everything is good and productive and then I share because I find humor in it
Them: comment about confusion/memory/age
Me: my #LongCovid is like getting older faster, when someone says something sometimes I don't even register that anything was said for a whole minute, lol
Them: well you're breathing your own air you don't get any fresh air
The one two punch: when you text sometimes I can't even decipher it
I'm suddenly so incredibly sad. The rest of the day is a wash.
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
The Disabled Ginger · I Don't 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)
Bluesky SocialBluesky
"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 …"
The Sick Times - Chronicling the Long Covid crisis · Live blog: International demonstrations ignite for Long COVID Awareness Day - The Sick TimesDemonstrations 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 during the ongoing pandemic, as many in the community observe
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