charlos
@loscharlos
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😎🌁🎷 #LongCovid March 2020 😵💫
San Francisco, CA
Joined August 2020
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Pinned Tweet
Thx
@guardian
for inviting me to share these
#LongCovid
questions.
One of the most agonizing parts of this condition has been waiting for the world to catch up with what we know about the disease - & the abysmal lack of urgency to do anything about it. /1
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Hi my name is Charlie and
#LongCovid
has destroyed my life. Today is two years.
Before my 'mild infection' I was a healthy fit 30 year old biking 10 miles a day. Now I can't work or leave the house. I still can't breathe right. It‘s a nightmare.
Here are my 4 questions:
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2. Why still no robust health warning?
Whether
#LongCovid
prevalence is 5% or 50% (meta-analysis has 20-30%, 10% if vax), most conservative estimate is 1/20 people! A "medically rare event" is 1/1000.
If you work in govt, media, or medicine, your silence is immoral & cowardly.
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4. What is our **plan** to help people who've lost their jobs & housing due to
#LongCovid
?
My short term disability runs out soon & I haven’t a clue what I'm going to do. This is a disaster. Long term disability is being flooded & has been denying majority of LC patients.
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3. Why haven't we started meaningful trials for
#LongCovid
?
We have dozens of promising case studies that should have prompted trials a year ago. This is where I'm genuinely confused. Lack of action doesn't make sense economically, politically, or medically. It's just insane.
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1. Why don't we have diagnostics yet for
#microclots
? It's simple test that could provide a biomarker for millions. Every patient in research setting has these detected.
This should be priority
#1
. Easy to do & immediate implications for treatment. Current absence is a failure.
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We have a virus ripping through this country at an infectious rate bordering on measles that is giving 1 in 5 people a new health condition - and we have zero mitigation efforts in place.
It sounds so crazy to say that out loud.
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So just to recap: Yesterday the
@CDCgov
acknowledged that 1 in 5 people will develop a new health condition (
#LongCovid
) after infection.
Then today, the biggest study to date notes vaccines only reduce Long Covid incidence by 15%.
Anybody want to talk about this?
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People are literally just looking at the latest
#LongCovid
data and going: "Well I hope it's not true".
ITS TRUE.
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32 today, so far I’ve spent my entire 30’s w/
#LongCovid
😵💫 ~ Haven’t been able to leave the house for a meaningful outing since last Spring.
This year I’d love the world to start responding with the urgency required to address the greatest mass disabling event in history. 1/4
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Well it’s been over a week since
@CDCgov
said 1 in 5 infected people will get
#LongCovid
& I’ve yet to see a single journalist directly ask a public health or elected official how they plan to address that.
There is zero accountability.
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Just spoke with a wonderful disability lawyer & they said:
"Claims across the board are being scrutinized to a degree I've not seen in 20 years of working. I'm confident they are petrified of hundreds of thousands of
#LongCovid
claims on the horizon. It's the only explanation."
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It's now explicitly clear the
@CDCgov
is deliberately lying to the public about
#LongCovid
This past week revealed they are *well aware* of its alarming rate and severity, yet still no public warning & now airplanes are good to go. This is so damaging & horrifying. 🧵1/8
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People are trying **really hard** to twist the lines of morality around not wearing masks, getting reinfected & thinking nothing of mass infection.
They want to be able to disregard people’s lives & remain morally intact.
The problem is you can’t — & that’s why they’re so mad
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“A nasal spray administered in high-risk adult COVID-19 patients in India reduced viral load by 94% within 24 hours and 99% in 48 hours, according to the results of Phase-3 trial of the drug published in The Lancet”
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“I would describe
#LongCovid
as having the worst hangover of my life, together with a bad flu, together with food poisoning — all at once, every single day.”
Powerful testimony from
@giorgialupi
via
@nytimes
tiktok/ig
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I turn 33 today. I’ve spent my entire thirties house bound & disabled by
#LongCovid
3 years in — I still can’t breathe normally. It’s a total nightmare. There’s millions of us.
It’s now year 4 of the pandemic — yet we have zero treatments, support or public warning for this🧵
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I had absolutely ZERO reason to believe a covid infection posed any threat or significant risk to me…
Then I got
#LongCovid
& it’s been 2.5 years of severe disability…
Then I found it’s happening to as many as 1 in 5 people infected & we’re still not warning people…
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We are nearly 3 years into the pandemic — and this still happens every week, people have no idea why they’re still or what
#LongCovid
is.
We have delegated public health to personal responsibility without any informed consent of the most likely serious outcome from infection.
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It’s official — Leana Wen has
#LongCovid
“In July, I wrote about the unsettling experience of being.. very ill & hospitalized. Many readers have kindly written to ask whether I’ve fully recovered.”
“I wish I could say yes — The truth is far from that.”
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Today is 3 years since my last run — I’ve been stuck on biological house arrest ever since with
#LongCovid
Every week — people who thought this could never happen to them — are devastated to join this nightmare.
Here’s 4 things you can do to help on
#LongCovidAwarenessDay
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Ok people it's been two days since we found out covid reinfections are definitively associated with worse outcomes across the board - including higher risk of
#LongCovid
- and it has yet to make a single news headline.
We live in a George Orwell novel.
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My experience with
@SocialSecurity
so far for
#LongCovid
disability 🧵
1. Hire a lawyer
2. Spend 6 weeks filling out app. Lawyer says “this is longest medical history I’ve seen in my career, this will take them months to go through”
3. Submit 12/15/22
4. Denied 12/16/22
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People with
#LongCovid
don’t “tell people” they have a new health issue. They’re confused - and they’re just hoping the symptoms will go away next week or next month.
They often don’t know Long Covid is even a term, because nobody warned them about that outcome.
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“It’s Really, Really Worth Trying to Avoid Getting COVID Multiple Times”
“A new study found people are more likely to develop
#LongCovid
or other serious health problems if they’re infected more than once.”
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“Covid is not primarily a respiratory disorder, it is a disease of the blood vessels… Despite this growing body of evidence, awareness is low among the public & medical community that Covid-19 is a vascular disease.”
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A “medically rare event” is 1 in 1000. The absolute most conservative estimates of
#LongCovid
are 1 in 20 infected— most estimates are much higher.
If somebody tells you this condition is rare please let them know they don’t have the slightest clue what they are talking about.
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#LongCovid
is a microvascular disease.
“The first thing to go are your smallest blood vessels… This will not show up on x-ray or CRP test.. your labs will look completely normal”
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This is my third summer of
#LongCovid
being stuck at home every. single. day.
Instead of riding my bike, going to bbqs, or hiking ~ I’m on biological house arrest watching the world slowly walk into this ring of fire with no warning.
This is a life ruining condition.
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“A SARS-CoV-2 reinfection, regardless of a person's vaccination status, increased the risk of all-cause mortality, hospitalization, [and
#LongCovid
] compared to the first infection.”
Should be headline news everywhere this morning.
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Out today in
@TheLancet
:
“Recovery is extremely rare”
“Unfortunately the small chances of recovering from
#LongCovid
during first 2 years underscore that, as long as SARS-CoV-2 transmissions continue & few people are cured, LC will continue to accumulate”
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“I would love nothing more than to ‘finally ignore COVID’.. As a healthy, vaccinated 35-year-old, I did what he said: I ignored COVID on a weekend trip with friends in 2022. But the infection I got as a result has all but destroyed my life.”
#LongCovid
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The startling & staggering amount of posts from people asking why they and/or their family still have symptoms after omicron now makes it very, very clear we will be dealing with the biggest wave of
#LongCovid
to date. And no one was warned.
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“When I asked
@EricTopol
whether the public really understands the risks of
#LongCovid
, he replied, ‘No, only the people affected and their friends and families.’”
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I have a piece out today in
@sfchronicle
asking a pretty simple question about
#LongCovid
:
In a pandemic of personal choice, where is the public warning for the most likely serious outcome from infection? 🧵
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“Let’s spend 5 good minutes on something it seems our government doesn’t want to talk about.. 30 million adults in the US currently have
#LongCovid
.. 80% of them are having trouble just doing every day things — and I know because I’m living it”
Powerful segment from
@ChrisCuomo
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YES,
#LongCovid
really is a mass disabling event.
"The resulting estimate of the number of 16-and-older Americans with a disability is up by about 2 million since early 2020. It had been rising over the decade before. but not at nearly that fast a pace."
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Spoke to
@PBS
along with
@edyong209
about how
#LongCovid
is hidden in plain sight — yet is the fastest growing public health crisis in the country, for which there are still zero answers for.
3+ years in, the degree of suffering & QOL is truly unfathomable.
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“The first photo is of me on one of my last family vacations before getting sick from
#LongCovid
— & the second one is of me today completely bedridden, 20 pounds heavier, but holding a lot of fright behind those eyes.”
“I hope the absolute best for everyone.. you’re not alone.”
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#LongCovid
patients just single-handedly funded the first prospective research diagnostic for the greatest mass disabling event in human history, while our governments, universities, & hospitals sat idly by with billions of dollars behind them. They couldn’t be bothered.
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“Former Sen. Jim Inhofe (R-Okla.) attributed his decision to retire due to
#LongCovid
.. symptoms were still affecting him day-to-day.”
“Five or six others have (long COVID), but I’m the only one who admits it”
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🚨 Absolutely stunning
#LongCovid
findings:
"Compared with healthy controls, the capillary density of
#LongCovid
patients was decreased by 41%"
"Our data strongly suggest that COVID leaves persistent capillary rarefication even 18 months after infection"
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“A new study has found that these symptoms may be the result of a viral-borne brain injury that may cause cognitive.. health issues that persist for years.”
“The brain deficits found in
#LongCovid
patients were equivalent to 20 years of brain aging”
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“We’re very early,'
@PutrinoLab
says.. But every sample from
#LongCovid
patients has revealed
#MicroClots
."
"They are not capable of clogging large vessels.. but they can significantly affect organ function."
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🚨New
@NIH
study on reinfections
“Overall, results indicated that the severity of SARS-CoV-2 reinfections was similar to those of the initial infection… & the number of
#LongCovid
diagnoses also showed an increase after reinfections with recent variants.”
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“So if someone is already pre-disposed to Parkinson’s, having COVID-19 could be like pouring more fuel on that ‘fire’ in the brain,” Woodruff said. “The same would apply for a predisposition for Alzheimer’s and other dementias”
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People with
#LongCovid
have no interest in this virus being extra scary or dangerous, we’re literally just telling you what it did to us - that’s it.
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“Almost half (45%) of the study’s
#LongCovid
participants needed a reduced work schedule on account of their illness & around one-fifth (22%) unable to work at all.”
These numbers are now very consistent. 1/2 are experiencing moderate to severe disability
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Not wearing a mask in a public place is a fascist act — whether it is intentional or not.
This is one of the best reads of the year so far — by
@msteenhagen
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“Scientists have found clear differences in the blood of people with
#LongCovid
— a key first step in the development of a test to diagnose the illness.”
“The research is among the first to prove that LC is, in fact, a biological illness” —
@PutrinoLab
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“People infected multiple times with COVID-19 are more likely to develop
#LongCovid
, and most never fully recover from the condition. Those are two of the most striking findings of a comprehensive new 3-year research study”
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If people knew a mild infection could result in an illness so debilitating they couldn’t leave the house regularly for nearly 3 years — They would assess infection risk differently.
Where is the
#LongCovid
public warning?
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Why aren't nasal sprays being discussed more in terms of covid prevention? Why isn't there a dedicated US brand being sold yet? This is so confusing to me.
Are these studies insufficient or something? If so, why aren't more being done?
👃🏽💦 Nasal sprays are an under-used but highly effective layer to include in your covid-safety strategy! 👃🏿 Here's a thread on 4 really effective ones:
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"I've never doubted it — people are suffering," says
@hmkyale
, a cardiologist at
@Yale
involved in
#LongCovid
research. "But we're now seeing imaging evidence, biopsy evidence, physiologic testing evidence of derangements in people who have long COVID."
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“To
@PutrinoLab
surprise, it was quite challenging to find people who fully recovered from COVID. Many post–COVID-19 volunteers described themselves as healthy but admitted, for example, their once-normal gym workouts were too exhausting to resume”
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My short term disability ends this month & my only option for income is to apply for long-term disability — & I was just advised by a social worker: “There’s no way they will accept you, you’re too young”
What are
#LongCovid
patients supposed to do w/ ZERO income?
I hate this.
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People don’t want to hear about other people with
#LongCovid
— because unlike other illnesses, acknowledging this one means they have to confront how their own risk is at massive odds with their current risk assessment & way of life.
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The NYTimes newsletter just said:
“
#LongCovid
, similarly, appears to be rare in both children and vaccinated people.”
This is an outrage & profound disinformation. LC has a 10% breakthrough rate in vaccinated ppl. A medically rare event is 1/1000.
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Two years in & there is still no public health warning around the most common adverse event from infection:
#LongCovid
We know this happens in 10-30% of all cases - & leaves 85% with symptoms for at least a year.
Something ppl may want to know when weighing “personal choice”
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“Researchers from Harvard.. created miniature brains & infected them with COVID.
What they saw explained a lot: An ‘excessive number’ of synapses were eliminated during the course of the disease.. similar to the level seen in Alzheimers”
#LongCovid
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Yes I was literally hung up on mid-sentence. I waited a month for that call.
This is the system
#LongCovid
patients (& anybody else in this situation) who can no longer work are going through — So far it’s an enraging nightmare.
But we’re scared of folks “taking advantage??”
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First
#LongCovid
poster I’ve seen in a public space — these just went up on
@SFBART
due to advocacy of
@kfrhoads
of
@UCSF
&
@umojahealth
— great to see local advocates step up & get a win.
If public health is not going to mandate masks — they need to disseminate info on risk.
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What
#LongCovid
continues to experience is a social medical phenomena know as the **Semmelweis Reflex** —
“the metaphor for the reflex-like tendency to reject new evidence or new knowledge because it contradicts established norms, beliefs, or paradigms.” 🧵
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I’ve had multiple people ask me in good faith this week: “If
#LongCovid
is really that prevalent & disabling why isn’t the government & medical community talking more about it?”
I can only think of three reasons, and they’re all incredibly, deeply sad. (1/1)
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“25% of children with COVID develop
#LongCovid
according to data from 21 studies carried out in Europe, Asia, Australia & South America.”
Before yahoos start saying this is “pandemic fatigue”, want to point out close to 1 in 10 have respiratory symptoms
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“People need to understand that you can get
#LongCovid
the second time, even if you dodged the bullet the first time. You can get long Covid the third time.”
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Post polio syndrome — not death from polio — is what motivated public health to eradicate that virus.
#LongCovid
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"People already on blood thinners were twice as likely to leave hospital.. which unexpected because people on these meds are usually sicker, so we thought there is something going on here"
— Absolutely must watch talk by Dr. Jordan Vaughn on
#LongCovid
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Spoke to PBS
@NewsHour
with
@PutrinoLab
& other patients on how millions with
#LongCovid
are stuck in an agonizing purgatory — it’s year 4 of the pandemic & we still have no treatments, no disability support, & **still** no public warning about this common outcome.
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If people knew what the
#LongCovid
respiratory issues felt like - they would probably never leave the house. It’s a waking nightmare, like a permanent lifevest on way too tight, can’t take deep breath & absolutely nothing can relieve it. After 2 yrs hard not to think perm damage.
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Yesterday: Massive
@NIH
EHR study released noting reinfections led to more
#LongCovid
, it made 1 small publication.
5 hours ago: An Israel EHR study published vaguely claiming "most" LC symptoms go away after a year. Can't find any quantifiable details. Already in 10+ outlets.
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Reminder it’s been two years and we still have ZERO treatments for the life altering condition affecting 10-30% of EVERYONE infected with Covid. 23 million Americans and 200 million worldwide and COUNTING.
#LongCovid
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This is the first comprehensive PSA I have seen on
#LongCovid
from a public health agency — and it is stellar.
“A big part of what I did is now gone.. when I got Covid I had no idea LC was a thing.. people think they are invincible. They’re not. Anybody can get LC.”
Jordan got COVID in January 2022, & his life hasn’t been the same since.
He shares how his life has been impacted by long COVID & urges Victorians to stay ahead of the virus with protective steps.
Learn more about the symptoms & how to stay safe:
1/2🧵
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It can not be overstated how many people — right now — are dealing with
#LongCovid
symptoms but have no idea what the hell is going on or what to do.
Every week I’m hearing “Long Covid? Is that what this is? I’ve had new issues for months now.”
We have failed.
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“I’m studying the most frequent disease in the world, which is COVID, & the 3rd most frequent disease in the US today, which is
#LongCovid
— & I have to spend even more time to convince people: 1, it’s real; 2, should be studied; &, 3, should be funded”
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If people knew with every infection there was up to a 1 in 5 chance of coming down with a condition that is “100x more fatiguing than cancer”, they would reevaluate how they navigate the pandemic.
But they don’t know ~ because there is no public health warning for
#LongCovid
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“You will have many patients come to us still in good numbers to fill up our clinics with maybe the third, fourth, fifth infection, & now having finally developed
#LongCovid
.. with symptoms that are enough to be disabling to their lives as previously known” — Dr. Marc Sala
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@IppokratisAnge1
Thank you for sharing your story
@IppokratisAnge1
~ it’s not easy or fair that we have to share our demise and deterioration with the world because our gov & public health institutions won’t, but without your courage to share, nobody is warned.
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I wrote this because early in the pandemic I needed a public warning that a mild infection could ruin your life — there was none — and the fact we are almost 3 years into this, with millions disabled by
#LongCovid
, and there is still no warning should enrage any sentient being.
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“I am sorry to have to say that I will not be attending due to my continued battle with
#LongCovid
that I have been dealing with since last December,”
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“A few months ago, I told a higher-up at The New York Times—we’re talking very high altitude—that I’d been struggling with
#LongCovid
. His reply: ‘Is that the excuse everyone at The Atlantic uses when they’re unproductive?’”
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I turn 34 today — I’ve now spent my entire 30s with
#LongCovid
— about as long as I was in high school or college. I haven’t been on a walk since Spring 21’ & remain severely housebound — whole thing is surreal.
thoughts for 2024 🧵
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“COVID no longer controls our lives.” —
@POTUS
You’ve got 20+ million Americans with
#LongCovid
who fucking disagree.
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"The mitochondria are compromised & tissue starved for energy”
“The tissue samples from
#LongCovid
patients also revealed severe muscle damage, disturbed immune response, & buildup of microclots”
“They were able to link symptoms to these organic changes”
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"The more times you get it, the more likely you are to be unlucky and end up with
#LongCovid
— which is the thing that none of us want because it can be so serious" -
@WHO
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New
#LongCovid
study from
@Stanford
“13% of participants continued to shed SARS-CoV-2 RNA in the feces at 4 months after diagnosis & 4% shed at 7 months. Finally, we find that GI symptoms are associated with fecal shedding of RNA.”
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"Normally, a patient should be able to extract 75% of the oxygen from their blood, but the
#LongCovid
patients are able to extract only 50%" - Dr. Joseph
@Yale
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This prospective study followed 341
#LongCovid
for 2 years — only 7% recovered.
This is line with what other major prospective studies are finding to date, including
@NIH
.
WE ARE NOT RECOVERING.
From a new preprint of a 2-year, prospective follow-up cohort of unvaccinated individuals with Covid in Spain
"Recovery is extremely rare [from
#LongCovid
] during the first 2 years [full = 7.6%], posing a major challenge to healthcare systems."
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The reason why people don’t want to hear
#LongCovid
stories is simple:
Their government and public health officials tell them the pandemic is over.
Our stories tell them it’s not.
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My financial situation right now is not great & I don’t have parents or family “I can just move in with” — Right now I’m just hoping I can get better before I can no longer pay rent.
It’s shocking to discover this has been the situation disabled folks are experiencing every day.
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Also, in case it’s not clear, anybody can get
#LongCovid
— regardless of vaccination status, prior infection, health status, age — and especially regardless of your perception of the threat of long covid.
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From German Health Minister:
“In a few years we will see full extent
#LongCovid
. Now everyone should try to avoid infection. Even if the course is mild, there is a risk that life will change. Nobody likes to hear it, but that's the way it is”
Leider ist es genau so, lesenswerter Artikel in
@SZ
. In ein paar Jahren werden wir volles Ausmass
#LongCovid
erkennen. Jetzt sollte jeder versuchen, eine Infektion zu vermeiden. Selbst bei mildem Verlauf droht eine Veränderung des weiteren Lebens. Hört keiner gerne, ist aber so
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I'm not pro "lock-downs", but it's incredibly eerie that China has made the decision that protecting their population from infection **far outweighs** any short-term economic hit from that decision.
It makes you wonder what they are seeing in their
#LongCovid
data.
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The deluge of folks now developing
#LongCovid
on 2nd, 3rd, 4th+ infection (with no issues on prior infections) — should stop everyone in their tracks to think: “Wait a second — What is the plan for this situation?”
There is none — & nobody who developed LC, thought they would.
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“A case of an 11-year-old girl with persistent abdominal pain. After a colonoscopy & other therapies found nothing, doctors wondered if the covid infection 3 months earlier could still be causing trouble. They looked for evidence — & found it.”
#LongCovid
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“A simple stool test can tell recovered Covid-19 patients their risks of suffering the effects of
#LongCovid
with 90% accuracy, researchers at the Chinese University of Hong Kong have found.”
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4. If you’re not wearing a mask in public spaces, please reconsider.
I get social conformity is the driving factor for most human behavior — but the amount of suffering & agony you can save by wearing a mask at pharmacy, grocery, transit, etc is immeasurable. Be a fkn rebel.
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“Usually, you’d find like 5-8% of people in the general population in this age group that would show this kind of change. But 25% was too much. So, we investigated.”
#LongCovid
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🚨JUST ANNOUNCED🚨
BERNIE IS HOLDING A HEARING ON
#LongCovid
NEXT WEEK
#PODSAVEJON
Was informed by my Senator’s staff today (
@SenTinaSmith
) that Congress has called for a HELP Committee hearing next week (Full Committee) to address Long COVID.
They also noted to me that patient advocacy has been vital in raising the issue to them. 🗣️
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