Diana Zicklin Berrent Profile picture
Warrior Princess. Covid Disrupter. Founder of @Survivor_Corps 10/10 by Room Rater https://t.co/O2qV0ztzES She/Her
Potato of Reason Profile picture J Doe (they/them) Profile picture 2 added to My Authors
14 Sep
Thought it was hard to find monoclonal antibodies before? Well, it's about to get harder.

@HHSGov just announced that rather than take orders from hospitals they will allocate to states based on hospitalization rates and have the states distribute them.
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This system will reward the states with the lowest vaccination rates and harm those with the highest.

Ex: NY has high vax rate and low hospitalization rate. NY will receive 4000 doses weekly. How will they be given out?
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If they are distributed to each participating hospital no one will provide the therapeutic. It is too costly to set up an infusion center if you only have 10 doses to give out weekly.

Who is harmed?
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Read 5 tweets
13 Sep
PSA: if you weren’t able to get tested for Covid and / or didn’t have a detectable antibody response you are STILL eligible to be treated at a Post-Covid Care Center.

Find one near(ish) you:
survivorcorps.com/pccc
From @CDCgov:

“At this time, no laboratory test can definitively distinguish post-COVID conditions from other etiologies, in part due to the heterogeneity of post-COVID conditions.”
Read 8 tweets
5 Sep
I've tweeted you all through my mother's death. We buried her this morning and I want to share my eulogy with you all so you can know her in life, not just in the indignities of death... Please indulge me.

A eulogy for my Mother in a 🧵...
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My mother was elegant, discriminating, funny and complex. The ultimate critic, she could pick apart a novel, an art exhibit or your outfit with equal ease and strength of conviction.
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Her attention to detail was, at once, her superhuman strength - her ability to recall and recount the trim on a dress she bought in 1958, the tuna salad from the luncheonette in Far Rockaway, an exchange with a sixth grade teacher, a dish served by a friend fifty years ago.
3/
Read 24 tweets
2 Sep
A 🧵 on death (not Covid related)...
I’m sitting in a hospice room on death watch waiting for my mother to take her last breath. That said, I have a few thoughts about death that I want to share. And, trigger warning, it won’t be easy to hear… but we can do hard things.
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My mother is almost 82 and is over 2 years into a stage 4 cancer diagnosis with a 6-9 month life expectancy.
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Read 21 tweets
3 Aug
“Our members are getting denied disability every day and this is a recognition of the wrap-around services that we are going to need to provide to all survivors of COVID.”
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#LongCovid abcactionnews.com/news/coronavir…
“And it’s not the end of the line either. It is a good first step. I worry that it’s a bit toothless because we still don’t have a diagnostic code for long-term COVID, said Diana Berrent, the founder of the organization @Survivor_Corps.
She’s preparing to lobby at the Capitol.
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“We need long-term COVID care centers throughout the country. I could go on and on. We need a billing code. We need a name,” Berrent said.”

3/
Read 4 tweets
2 Aug
“Right now, Berrent is focused on long COVID advocacy and convincing the CDC to mandate reporting of all breakthrough cases.

“We have to step in where nobody else is doing it, and that is ludicrous,” she said. “But if it’s necessary, then we’re here to do it.”
#LongCovid @CDCgov
“In my opinion, CDC should be tracking all consequences of breakthrough cases, not just hospitalization and death,” Akiko Iwasaki, the Yale University immunology professor at the forefront of long COVID research, said in an email.”
@VirusesImmunity @YaleMed
“Even mild or asymptomatic infection can lead to long COVID. Tracking this on a national scale would be very informative.” Iwasaki is one of the only experts to have stated outright that fully vaccinated people can still get long COVID.”
Read 4 tweets
22 Jul
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.
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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)
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-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)
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Read 18 tweets
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
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38% of breakthrough symptomatic cases led to Long Covid
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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.

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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