Let's talk about breakthrough symptomatic infections in fully vaxxed adults...

Today @SurvivorCorps will meet with the @CDCgov to present our data and ask for changes in policy to reflect real world evidence.

@CDCgov is only tracking hospitalized cases so we did it instead.
We ran a poll of our 170K member group and had 1949 fully vaxxed adults participate.

Our Key Takeaways:

-Vaccines Work (but not all the time)

-Of 1949 fully vaxxed adults there were 44 breakthrough symptomatic cases (we couldn't measure asymptomatics for obvious reasons)
-Vaccines will likely keep you from acute symptomatic Covid needing hospitalization

-*HOWEVER* 55% of breakthrough symptomatic cases led to Long Covid (this is staggering)

-(Narrator Voice: If I had J&J I would want a booster)
Tl/dr: Breakthrough symptomatic cases of Covid in fully vaccinated adults lead to #LongCovid. Full Stop.
Based on this data the CDC should revise its guidance:
-Vaxxed ppl should remain masked indoors
-Vaxxed ppl should get tested when symptomatic
-CDC should mandate reporting of All breakthrough cases
-CDC should mandate reporting of ALL vaccine injuries (VAERS is a bust)
We cannot track what we aren’t counting.

Have we not learned that simple lesson from a mere year and a half ago?

Low testing doesn’t mean low numbers; it means bad science.
We are also creating a new cohort of untested individuals who will struggle with diagnoses of Long-Term Covid, a devastating multi-organ condition that can ravage the body of the youngest and healthiest among us.
This is also the backbone of our economy. #LongCovid
Our data is somewhat skewed b/c it was done within Survivor Corps. While this is not data you are going to take to the bank, it offers a tremendously compelling clue that our policies are not in line with what’s really happening on the ground.

And it's the only data we have.
And, remember, even a really small percentage of a really big number is still a really big number.
This is Citizen Science 2.0... Citizen Scientist Collaboration.

We are honored to collaborate with @DaisySMassey and @hmkyale @Yale @YaleMed on this and other projects.

Stay tuned for our imminent publication on MedRxiv
Full breakdown by vaccine below:

Total – Of 1949 fully vaxxed adults there were
- 44 symptomatic breakthrough cases (2.3%)
- 24 of which led to Long Covid (55%)

3 Hospitalizations (only one of which led to Long Covid).
(These would be only 3 counted under current rules)
Of 1024 adults fully vaxxed with Pfizer there were
- 19 breakthrough symptomatic cases (1.8%);
- 12 of which led to LC (63%);
- Zero hospitalizations
Of 775 adults fully vaxxed with Moderna there were
- 17 breakthrough symptomatic cases (2.2%);
- 6 of which led to LC (35%)
- 1 hospitalization (no Long Covid)
Of 150 adults fully vaxxed with J&J there were
- 8 breakthrough symptomatic cases (5.3%);
- 6 of which led to Long Covid (75%);
- 2 hospitalizations (one of whom developed Long Covid)
And yes I tagged the wrong Survivor Corps… 🤷‍♀️ @Survivor_Corps
Let me clarify for those in the last row… this is data based off of a biased sample. No one is suggesting that 55% of breakthrough symptomatic infections lead to Long Covid in the general population.

The fact that some cases do, though, means we should be tracking it.
Our paper on Breakthrough Symptomatic cases leading to #LongCovid has been published. With @DaisySMassey and @hmkyale

@YaleMed @Survivor_Corps

THIS is Citizen Scientist Collaboration at work.


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More from @dianaberrent

13 Jul
Since the @CDCgov won’t track breakthrough cases and if they lead to #LongCovid @Survivor_Corps decided to step in…

We ran a poll of 1735 fully vaccinated adults

A thread with our results…
Key Findings:

Both Pfizer and Moderna had significant fewer breakthrough symptomatic cases

Far fewer J&J recipients who had breakthrough symptomatic cases ended up with Long Covid
38% of breakthrough symptomatic cases led to Long Covid
Read 13 tweets
28 Jun
Because data matters... This will be my nerdiest thread ever... but important!

Keeping you all posted on our @Survivor_Corps polling on breakthough cases and how many are leading to Long Covid but are not being tracked because they weren’t hospitalized….
1364 Participants

According to @Survivor_Corps polling:

In total, 35 breakthrough infections, 1 Asymptomatic.
20 Cases resulted in Long Covid.
2 Hospitalizations, only one that resulted in Long Covid.
@Survivor_Corps Breakdown by vaccine:

14 Total Breakthrough Infections
4 Resulting in Long Covid
1 Hospitalization (not resulting in Long Covid)
Read 7 tweets
10 Jun
The @CDC isn't tracking non-hospitalized breakthrough Covid infections after vaccination so @Survivor_Corps is...

Out of 1070 people polled 30 had breakthrough infections and 16 developed #LongCovid
2 of 30 were hospitalized (neither got LC).

It's time for a Covid Registry!
13 breakthrough infections were after Pfizer. 8 developed Long-term Covid.
10 breakthrough infections were after Moderna. One was hospitalized. 3 developed Long-Term Covid.
7 breakthrough infections were after J&J. One was hospitalized. 5 developed Long-Term Covid.
Read 4 tweets
23 Nov 20
A thought on isolation... Something we should all be doing more of right now.

While in isolation with Covid I took inspiration from the father of one of my best friends...


After surviving the concentration camps of WWII he faced a year of isolation w/ tuberculosis. It was his year of isolation that he credited for saving his life a second time and opening his mind to the world of poetry and literature.

Samuel Pisar wrote in his memoir, “Thanks to tuberculosis, thanks to literature, I would be reborn once more.”

Read 5 tweets
10 Nov 20
My 12yo just lost an adult front tooth and his other teeth are loose... it turns out from vasculature damage 9 months after Covid.

Omg. PLEASE... I beg of you, take this seriously. For you. For your kids. For everyone.
I have been dealing with Covid in one way or another since Day 1. Today might have broken me.

#LongTermCovid #LTC19 #LongCovid
#LongCovidKids @Survivor_Corps
For all those who asked... The bottom right front tooth is no longer there. The left front isn't looking great either. 😥

For the love of God, #MaskUp America.

This, and all the other damage from Covid... It's not worth it. Skip Holidays 2020 so we can all live to see 2021!!! Image
Read 4 tweets

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