Johns Hopkins' pioneering COVID tracking center comes to a close
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March 11 marks three years since the World Health Organization declared COVID-19 a global pandemic.
The U.S. Centers for Disease Control and Prevention’s working definition of long COVID includes symptoms or conditions that continue or develop after an initial infection. It can last weeks, months, or even years.
Scripps News has met dozens of faces of long COVID in the past three years, from children to adults. Their quality of life has been largely altered by lingering symptoms after a COVID-19 infection.
Among the people impacted are Patrick Malia, Kari Lentino, and Holly Olson.
"My five-year-old especially worries. His biggest concern is that daddy's going to die," said Malia.
"I feel like a brain blizzard half the time. It's frustrating and depressing," said Lentino.
"It's not fun. I will be honest. This is not the way to live. I'm doing my best," said Olson.
It was late spring 2020 when the medical field began documenting long COVID.
Even now, doctors like Marc Sala worry about the new patients they still see coming in.
"What a lot of individuals seem to underplay, even within the medical and scientific communities, is the impact of long COVID on some people's lives," said Dr. Sala, co-director of the Northwestern Medicine Comprehensive COVID-19 Center.
Getting an initial diagnosis can remain a challenge. While the most common symptoms Sala sees in the clinic include brain fog, shortness of breath, and heart palpitations, there are more than 200 different symptoms that fall under long COVID.
"Many people thought that it's in people's heads, and, you know, it's not real, but it is a real entity," said Dr. David Rosenberg, of University Hospitals.
Doctors also don’t have a diagnostic test for long COVID. Making the disease a diagnosis of exclusion.
"You kind of rule out other things that might have been causing their symptoms, and then you're able to call long COVID." But it is a struggle," said Dr. Sala.
A recent blog by the National Institutes of Health (NIH) Director shares what leading researchers have learned about long COVID:
- People hospitalized with COVID-19 are twice as likely to have long COVID
- Racial and ethnic minorities with long COVID were more likely to have been hospitalized with COVID-19
- People infected with the earlier variants have a higher number of symptoms than those infected with the more recent one
In some good news, a January 2023 poll found the percentage of Americans experiencing long COVID symptoms declined from 19% in June 2022 to 11% in January 2023.
A big question out there still is treatment. Research is underway now to find telltale biomarkers of long COVID. It’s crucial to developing and testing any drug.
The latest research—an anylasis of nearly 30 studies—did find specific biomarkers connected to long COVID symptoms. But the researchers say we’ll still need to find a core set of blood biomarkers for doctors to diagnose and manage long COVID patients.
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