"On Friday, March 15, people with Long Covid and their allies gathered in front of the Lincoln Memorial in Washington D.C. for the Long Covid D.C. (LCDC) protest to commemorate Long Covid Awareness Day."
Senate Resolution 590 which would formally recognize #LongCOVIDAwarenessDay will not pass without your help! Formally recognizing #LongCOVID Awareness Day helps legitimize and destigmatize Long COVID and opens up several other doors for us for awareness purposes which helps our cause across the board!
You do not need to have Long COVID to help support this effort & our community! Long COVID awareness is COVID preparedness
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> As Long COVID patients become louder, as their presence becomes more undeniable, as their numbers grow, the COVID normalization project must pivot from attempting to disappear these victims to steadily stigmatizing them.
On March 15 aka Long COVID Awareness Day, outlets across the globe chose to elevate an unpublished, un-peer-reviewed, observational text-message based “study,” and its absurd claim that Long COVID is nothing new and everyone should stop talking about it.
This political choice- elevating a single unpublished study which examined a total of zero patients and ran a total of zero tests- when tens of thousands of others contradict its findings, is unsurprising. The political choice to do so on a day intended to draw attention to the suffering of tens of millions of people is cruel in the extreme.
"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."
Along with the usual news items covering research and advocacy this week's news summary includes a thread with media coverage of #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.
Thrilled to see Act Up NY speaking out about #LongCovidAwarenessDay. Act Up did such incredible work during the HIV/AIDS crisis - they really laid the groundwork for how grassroots activism could impact change & save lives. H/t @taylorlorenz for post.
"Fear of COVID fades even as virus remains a ‘significant threat,’ survey reveals"
"The changing attitudes reflect recent shifts in public health policy…
However, this may not accurately mirror the actual threat of COVID-19, which continues to claim hundreds of American lives each week and land thousands more in hospitals."
Amazingly, 22% of survey takers had never heard of Long Covid! 🤯
This #LongCovidAwarenessDay I want to say sorry. I’m sorry to everyone who’s joined the ranks of the chronically ill & disabled because our leaders, public health and fellow citizens refuse to take Covid seriously.
Those of us who were disabled before the pandemic could see this wave of chronic illness coming - and many of us have been screaming from the top of our lungs the last 4 years. Begging people not to take their health for granted & to wear a mask and protect themselves. Warning them that there are no do-overs once you become chronically ill.
Unfortunately very few people are listening - and many won’t understand the true devastation of #LongCovid until it directly impacts them. At which point it’ll be too late.
Despite seeing these waves of disability as an inevitable consequence of “let er rip” Covid strategy - one thing I did not see coming was how many people would willingly embrace not only ableism - but full on eugenics.
People in my own life who were previously kind & supportive have become cruel and angry. The masks have been ripped off. They don’t hesitate to tell me that they blame me for the restrictions placed on them in the early days of Covid - and that they will never again allow their freedoms to be infringed on in the name of protecting the vulnerable. One even went as far as to say “you’ve been sick for years - just die already.”
People who say these things don’t understand what disabled people understand all too well - your health is not a permanent state. Everyone will become disabled eventually…. Some of us earlier than others. Also many people who think they’re invulnerable are already vulnerable and don’t even know it.
Yet rather than adapting behaviour and pushing for a new normal that makes the world safe for everyone - most temporarily abled people have instead doubled down on hateful eugenics talking points and want us to stay home forever (or worse - die). It needs to stop.
Covid is airborne and we all share the air. “You do you” individualism is quite literally killing people. We need to start caring about the air we share as this will lead to a healthier society for everyone. Until then we need to mask up. It’s not hard, it’s incredibly effective & it might save someone’s life.
If you want to read more about the “friend” who told me I should “just die already”… I wrote about it & the behaviour changes I’ve noticed throughout the pandemic here: https://disabledginger.substack.com/p/just-die-already
"On March 15, 2024, Patient-Led Research Collaborative commemorates International Long COVID Awareness Day. On this day, we honor those with and affected by Long COVID globally. We collectively mourn those who lost their lives to Long COVID and COVID-19. Together, we raise awareness, foster community connectedness, and fight for our lives."
"People with Long COVID in Australia have poor health outcomes that are comparable with another emerging disease known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) …
Quality of life and disability scores were significantly poorer for both Long COVID and ME/CFS when compared with healthy people"
Today is #LongCOVIDAwarenessDay. According to the CDC, ~7% of Americans have experienced long COVID – that's ~17.6 million people. There are more people in the US with long COVID than there are with red hair.
However, many event organizers think there are so few people impacted that they don't need to implement Health & Safety measures.
If you consider the cycle of inaccessibility, you have to wonder... how much of that is self-fulfilling prophecy?
I think diagnoses like #LC & #MECFS are important for those ill after an infection to help adapt to the impairments, not get worse from pushing/having to push, etc
@tomkindlon PutrinoLab has posted a strong opinion on thisnpiece on the birdsite today (and I applaud them) https://threadreaderapp.com/thread/1768506640704422062.html
Important to not minimise and keep talking about what's happening with us long haulers (of all post infectious diseases). Time for research and treatment
your friendly periodic reminder that SARS-CoV-2 is not and will never be the "flu." Unlike influenza, it binds to ACE receptors which are throughout major organ systems, yes including your brain:
Despite how much reporters, politicians, and even some scientists 😢 like to dust off and parade out the "flu" analogy, Covid is not the flu. Never has been, never will be.
Today is #LongCovidAwarenessDay and marks one year since I started talking openly about my personal health.
I've never been comfortable with sharing my personal information, but I hoped by talking about what it's like living with #LongCovid (for nearly 4 years now) folks may reconsider their YOLO approach to #covid and actually #WearAMask
This past year has been the worst of my life. It was the year hope died. Hope that I might get better, and hope that ppl might take #Covid seriously.
it's a multisystem disease that can disable you and ruin your life without warning
even if you feel you'd be fine if that happened to you, you could still try and avoid giving it to someone else who doesn't want their life ruined (especially a child)
the people who want you to think it's not a problem are the same people who say the economy is great, equality has gone too far and climate change is no biggie, so that should tell you something
"Wir planen für den internationalen #LongCovidAwarenessDay eine Visualisierung in #Berlin. Um unsere Planung umsetzen zu können benötigen wir 600 Personen, die uns für eine Stunde mit Augenbinden, Schallschutzkopfhörern und einem Bild in der Hand vor Ort unterstützen.