charlos Profile picture
Feb 23 9 tweets 10 min read
“It is year four of the pandemic, & we still have no treatments, support or public warning for the most common adverse outcome from infection — #LongCovid

Spoke to @abc7newsbayarea how moving beyond covid without treatments for LC is simply impossible.
abc7news.com/covid-19-pande…
"I don't think the general public really understands how bad it can be," said @oliviah0808 "I don't want to sugar coat anything. Having #LongCovid is like a nightmare. The symptoms can be really debilitating." abc7news.com/covid-19-pande…
"When we hear that the public health emergency is ending, it sends a message to a lot of people to kind of relax with their precautions.. What's going to happen is more people are going to end up like me, unfortunately," @oliviah0808 #LongCovid
@oliviah0808 is young, healthy & had no underlying health conditions.. she never expected she would experience #LongCovid. But 8 months later, is still dealing with the impacts.. She had to drop out of graduate school & move back home with her parents.. & not been able to work”
“Even if an emergency ends, there is still a crisis," said @kdurquiza, co-founder of @MarkedByCovid. "We are about to lose a ton of protections we need to work together with community leaders to ensure we're not leaving people behind."
“Ending the public health emergency without more public warnings about #LongCovid, or proper treatment for it, is irresponsible.” abc7news.com/covid-19-pande…
@oliviah0808 wants people to understand the risks & know that more people are likely to get #LongCovid

‘Again, I thought that I would be perfectly fine. A lot of people that are healthy & vaccinated are, but a lot of people will end up like me. Life on pause, no end in sight.’”
Thank you @ABCLiz for this great piece! @oliviah0808 excellent job sharing your experience & @kdurquiza thank you for being such a relentless advocate. 🙏

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More from @loscharlos

Feb 24
“Former Sen. Jim Inhofe (R-Okla.) attributed his decision to retire due to #LongCovid.. symptoms were still affecting him day-to-day.”

“Five or six others have (long COVID), but I’m the only one who admits it” huffpost.com/entry/gop-ex-s…
“Inhofe’s chief of staff, Luke Holland, announced the senator had ‘a very mild case’ of the virus almost exactly one year ago, the same day Inhofe announced he would be retiring.” #LongCovid
Read 4 tweets
Feb 22
“80% of people who come to our clinic with #LongCovid — usually with very severe symptoms — have not been hospitalized & did not have severe initial infections… many patients are young, healthy people.” — Dr. Linda Geng co-director of Stanford PASC Clinic stanforddaily.com/2023/02/22/the…
“Although she experienced only mild symptoms during the acute stage of COVID-19 infection, Chloe Hughes ’26 suffered from brain fog, shortness of breath for.. months after initial illness.. ‘I didn’t know what #LongCovid was,’ she said”
“I went to the doctor’s morning after I ran for the first time after getting sick, & realized I could only run for a few minutes,. [The doctor] said I had long COVID and told me to wait it out. It was a scary experience. I didn’t know if I’d be able to exercise normally again,”
Read 6 tweets
Feb 22
“I’m not sure if I’ve ever seen a group that’s as well set up to study tissue [persistent infection & immune response] as your group” — Excellent interview with @microbeminded2 discussing such a critical area of research for #LongCovid with Dr. Henrich of @UCSF
Overall one of the best interviews I’ve heard on #LongCovid & associated conditions this year: Super interesting to hear how they see combination therapies as likely essential to treating this, but very difficult to get approved for clinical trials.
open.spotify.com/episode/6ocs8l…
One of the key policy issues brought up is the difficulty in doing combination therapy trials (pharma companies will usually battle forever the intellectual rights) — it eventually happened with HIV but took too long — Should be major area of focus for policymakers & advocates.
Read 6 tweets
Feb 17
Spoke to PBS @NewsHour with @PutrinoLab & other patients on how millions with #LongCovid are stuck in an agonizing purgatory — it’s year 4 of the pandemic & we still have no treatments, no disability support, & **still** no public warning about this common outcome.
“We need the public to understand that dying is not the only risk of serious life altering effects from an acute covid infection” — @PutrinoLab pbs.org/newshour/show/…
Thank you @emmyremmyloo for sharing your story about developing #LongCovid from a reinfection — When you were OK on first infection — so many people think they are past this possibility after they recover first time.

We know this couldn’t be further from the truth.
Read 4 tweets
Feb 16
“As the public health disaster of #LongCovid unfolds, everyone can play a part.. we need to start talking more about long Covid as the emergency it is” — @WesElyMD statnews.com/2023/02/16/the…
“I used to build prototypes multiple days a week and now, if I do anything in the lab, I’m pretty much wiped out for a week. It’s terrifying. I mean, I’ve had to dig real deep. How much longer will I feel like this? I’m scared.” #LongCovid statnews.com/2023/02/16/the…
“I walk down the hall and see dozens of pictures of family trips and feel like a ghost because I don’t remember any of them. Now I’m trying to figure out who Barbara 2.0 is going to be.” (Her husband, tearing up as he listened to her, said softly, “I just want my wife back.”)
Read 9 tweets
Feb 14
"A study conducted at @UCSF, found evidence for viral particles in the brains of people with #LongCovid."

"The virus could linger in the brain for months, according to research conducted at the @NIH & reported in Nature." scientificamerican.com/article/long-c…
"The autopsy study of 44 people who died of COVID found rampant inflammation mainly in the respiratory tract, but viral RNA was detected throughout the body, even in the brain, as long as 230 days after infection."
"Nath, who also studies #MECFS, says that 'we think mechanistically they are going to be related.' Researchers suspect that ME/CFS, like some cases of #LongCovid" scientificamerican.com/article/long-c…
Read 12 tweets

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