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:
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.”
“A positive SARS-CoV-2 viral test (i.e., reverse transcription polymerase chain reaction [RT-PCR] test or antigen test) or serologic (antibody) test can help assess for current or previous infection;”
“however, these laboratory tests are not required to establish a diagnosis of post-COVID conditions. SARS-CoV-2 RT-PCR and antigen testing are not 100% sensitive.”
“Further, testing capacity was limited early in the pandemic so that some infected and recovered persons had no opportunity to obtain laboratory confirmation of SARS-CoV-2 infection. For information about antibody testing, see “Using Antibody Tests for COVID-19.””
“Healthcare professionals should also consider the possibility of SARS-CoV-2 reinfection, especially in persons with new or worsening post-COVID conditions, see “Guidance for SARS-CoV-2 Reinfection.””
Bottom line: know your rights as a patient!!!

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More from @dianaberrent

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.
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?
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?
Read 5 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 🧵...
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.
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.
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.
My mother is almost 82 and is over 2 years into a stage 4 cancer diagnosis with a 6-9 month life expectancy.
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.”
“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.
“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.”

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.
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)
Read 18 tweets

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