charlos Profile picture
Mar 27 5 tweets 2 min read Twitter logo Read on Twitter
Over the next 3 years the average person is expected to have around 6-9 covid infections — Knowing everything we now know about SARS CoV 2 — How confident do you feel everything is going to be just fine? #LongCovid
When I spoke to @zalaly about repeat infections he said — at a certain point we might expect something like full immunity — Whether that’s 5th or 10th infection nobody can tell you, because variants change so often, so question is how much damage is accumulated before that point.
The way his research is often misinterpreted: “Of course there is no way for cumulative risk to decrease”, but the amount of cumulative risk increased was “incredibly significant” & “unanticipated” — So question is: how much damage to population level health before full immunity.
We talk a lot about symptomatic #LongCovid — Because it’s literally hell on earth, there’s millions of us and we’re doing nothing about it & yes, as of now, everybody is at risk whether you’re willing to accept that or not — In coming years we’re going to hear more about..
“Silent #LongCovid” the rise of onset heart attacks, strokes, dementia, Alzheimer’s, diabetes, etc from infection in general population without LC symptoms — The population burden we are expecting is not at all commensurate with the race to better therapeutics & prevention.

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More from @loscharlos

Mar 27
"It's a mass disabling event," says Alba Azola, MD, co-director of the Johns Hopkins #LongCovid Team.

"The impacts are staggering. We have a scale that's unprecedented.”medicalxpress.com/news/2023-03-u…
“Some of these individuals can't work and they can't be caregivers for children or aging parents.. what makes the issue a burgeoning public health crisis, Duggal says, is the sheer number of patients affected.” #LongCovid
“A June 2022 @CDCgov study estimates that as many as 20 million American adults—1 out of 13 people over age 18—have lingering COVID-19 symptoms that impact their lives months after infection.” #LongCovid
Read 9 tweets
Mar 25
“Still he never got ‘terribly sick’.. More than a year later, he’s teaching from an electric wheelchair, so tired most of the time that even the simplest tasks are often overwhelming.”

“Instead of running 15 miles, walking 15 feet winds me.” #LongCovid deseret.com/utah/2023/3/23…
“The following weekend.. his friends planned a 15-mile run. ‘We were amping up for that Grand Canyon run,’ he said. ‘So I ran that 15-miler.’
How he felt afterwards turned out to be an early sign that COVID-19 wasn’t done with him. The run wiped him out for the entire weekend”
“I don’t know why COVID hit Blake so hard,” she wrote. “But, it’s really hard to watch him still struggling so much. The man that can normally conquer mountains can barely get through normal day-to-day tasks while heavily relying on multiple inhalers.” #LongCovid
Read 22 tweets
Mar 22
"It’s been at least a year since @Stanford PASC clinic began prescribing LDN for some of their #LongCovid patients.. 'For some it has really changed their lives, & even if that’s a few people, that’s encouraging sign that needs to be investigated further'" rollingstone.com/culture/cultur…
"Since there’s little incentive for pharmaceutical companies to invest resources into LDN, some experts, including Geng, believe that the best chance of large-scale randomized control trials taking place in the United States is with federal dollars." #LongCovid
“It would be great if the @NIH could fund randomized controlled trials, because that would really give [the drug] a boost in credibility and rigor and reputation behind a scientific study in this area.” — Linda Geng, MD, PhD, co-director of the @Stanford #LongCovid Clinic
Read 23 tweets
Mar 16
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
5. Lawyer is livid, says nothing to do but wait for denial explanation in mail.

6. After 30 days I call SSDI rep who says “looks like your case was dismissed because didn’t submit medical history form” — I say “but I did” they say “ya I see that, this might have been error”
7. Rep tells me will try to rectify situation & I will receive something in the mail in 14 days
-
8. 30 days later nothing in mail so call back. Talk to hostile rep who says nothing they can do, either I appeal or start a new app. I ask how to appeal w/o notice explanation..
Read 11 tweets
Mar 16
“Researchers should also study whether metformin can treat existing #LongCovid symptoms. Some experts believe Long COVID is caused by remnants of the virus in the body. If true, metformin’s antiviral properties might help clear it from the body.” time.com/6263356/long-c…
@EricTopol agrees more studies on metformin are needed—but he says he believes the early findings are promising enough, & drug is safe & cheap enough, that he would personally take it now if he got sick with COVID-19. ‘I don’t want to #LongCovid’ he says” time.com/6263356/long-c…
Do we have any anecdotal experience with #LongCovid patients taking this drug?
Read 4 tweets
Mar 15
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 Image
1. Please write your reps today

Over the past few months we’ve learned Congress is not hearing from us at all — This needs to change. They need to feel our wrath.

Here’s a fantastic letter from @LongCovidAP — takes 1 min.

Everyone should do this.
actionnetwork.org/letters/help-e…
2. Take 5, 10 or 20 min of your day to learn more about #LongCovid

Read: nyti.ms/3TgLvrL
Watch: bit.ly/3JQ0OVz
Listen: spoti.fi/405v7wz
Dive deep: go.nature.com/3ZO83ml

Bonus read: bit.ly/42hv6HA
Bonus listen: spoti.fi/3YY4OHS
Read 9 tweets

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