Champions like ⁦@NickGuthe will ensure that⁩ Covid cleans up the organ donation system like HIV for the blood industry.

🙏 ⁦@RoniNYTimes⁩ & ⁦@nytimes⁩ for carrying out Nick’s promise to ⁦@GirltoMom⁩ to use her story to save others. nytimes.com/2021/11/07/hea…
“If a deceased donor may have had long Covid and tested negative for Covid, however, the organs would be taken, Dr. Kumar said: “If we start turning down everyone who has had Covid in the past, we’d be turning down a lot of organs.”
“Before she died, Ms. Ferrer chronicled her ordeal in meticulous notes left on her phone: “Covid toes” that made her feet so sore she could not walk. A tremor that made her body shake violently. Pain in every limb. Relentless insomnia and despair.”
“Her heart raced. Her blood sugar levels fluctuated. Worst of all, she couldn’t think straight.

The hospital thought she would be a suitable donor anyway.”
Mr. Guthe said he had promised her that he would educate people about the burden of long Covid.
Now he has another mission.

“Heidi was a very giving person, but she would not have wanted this,” he said.

“We need to create guidelines for what is safe and what isn’t.”
/end

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More from @dianaberrent

7 Nov
A thread 🧵 on #LongCovid and chronic diseases…

Could long covid unlock clues to chronic fatigue and other conditions? - The Washington Post ⁦@washingtonpost⁩ ⁦@FrancesSSellerswashingtonpost.com/health/2021/11…
“Could endemic covid leave millions disabled with long-haul symptoms every year, creating a growing public health crisis?”

“Maybe this is a chance for us,” said Krumholz, who is working with colleagues to design rigorous, broad-based studies. @hmkyale
1/
Among his fellow researchers is Akiko Iwasaki, a Yale immunologist and principal investigator at the Howard Hughes Medical Institute, who lists five hypotheses that she believes could explain the biological underpinning of long covid.”
2/
@VirusesImmunity @YaleMed
Read 12 tweets
1 Nov
.@NewYorker published a piece on #LongCovid last month that drew significant and well deserved criticism. In response to our fierce objections to @DhruvKhullar's reporting they devoted today's ENTIRE Letters section to responses from me and @NickGuthe. newyorker.com/magazine/2021/…
My Letter to the Editor:

The New Yorker’s article on Long covid, in which I was a central subject, was a profound affront to everyone suffering the long-term sequelae of even mild and asymptomatic cases of covid-19 (“The Damage Done,” September 27th).
1/
The piece included no interviews with doctors or scientists directly investigating Long covid, and no interviews with patients battling the disease.
2/
Read 19 tweets
30 Oct
A photo 📸 thread🧵of Day of the Dead - when the veil between the living and the dead is at its thinnest.💀

Oaxaca, Mexico 2018
#DayOfTheDead #DiaDeMuertos Image
Image
Image
Read 20 tweets
4 Oct
The @NewYorker chose not to publish my Letter to the Editor regarding @DhruvKhullar's piece on #LongCovid.
newyorker.com/magazine/2021/…
A 🧵...
1/
The @NewYorker’s first article on #LongTermCovid, published in the September 27, 2021 issue, was a profound affront to everyone suffering the very real long-term sequalae of even mild and asymptomatic cases of #Covid_19.
2/
It is riddled with errors and was reported under false pretenses. @DhruvKhullar pitched this story to me as a personal profile – documenting how I started the world’s largest Covid movement, @Survivor_Corps.
3/
Read 21 tweets
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.
1/
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?
2/
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?
3/
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

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