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)
2/
-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)
3/
Tl/dr: Breakthrough symptomatic cases of Covid in fully vaccinated adults lead to #LongCovid. Full Stop.
#LongTermCovid
4/
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)
5/
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.
6/
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
7/
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.
8/
And, remember, even a really small percentage of a really big number is still a really big number.
9/
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
10/
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)
11/
Pfizer:
Of 1024 adults fully vaxxed with Pfizer there were
- 19 breakthrough symptomatic cases (1.8%);
- 12 of which led to LC (63%);
- Zero hospitalizations
12/
Moderna:
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)
13/
J&J:
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)
14/
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.
@hmkyale
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.

medrxiv.org/content/10.110#medtwitter

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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
2/
38% of breakthrough symptomatic cases led to Long Covid
3/
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:

Moderna:
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...

/1


nypost.com/2020/03/26/cor…
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.

/2
Samuel Pisar wrote in his memoir, “Thanks to tuberculosis, thanks to literature, I would be reborn once more.”

/3
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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