Charlie McCone is in his early 30s and says he's always lived an active lifestyle.
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"Biking, you know, 10 miles a day, back and forth from work, from the Sunset to SOMA, tennis, hiker," McCone said.
This was until he got COVID in March of 2020. A few weeks later, he says he thought he was recovering until life changed dramatically.
"It's completely unrecognizable from what it was before. It's a nightmare. I got sick when I was 30. I'm now 32. I've spent my entire 30s with this condition, completely housebound," McCone said.
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McCone is a patient at the UCSF Optimal Clinic for Long Covid.
UCSF, along with the San Francisco Department of Public Health and San Mateo County Health, is partnering with local community groups to learn more about long Covid, the physical and mental health symptoms that last long after initial infection.
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Dr. Kim Rhoads, a UCSF Associate Professor, is leading a large component of the community engagement piece of the study. She says common long Covid symptoms include fatigue, shortness of breath, pain, problems with concentration, depression and anxiety.
"The coronavirus was called novel because it's not something that we've seen in human populations before and so we don't know much about it, it's only been 2.5 years," said Dr. Rhoads.
Researchers want to know how common long Covid is, what causes it and how to prevent and treat it.
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"It's desperately needed," said McCone.
During phase 1 of the project, researchers will call San Francisco and San Mateo County adult residents who had COVID at least three months ago.
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In phase 2, some people who were previously interviewed will be asked to join a more detailed research study lasting three-to-four years.
Dr. Rhoads says researchers are especially interested in hearing from minority groups who have experienced higher rates of infections, hospitalizations and deaths.
"The black and brown communities have been disproportionately affected by COVID so this would suggest that there's going to be a disproportionate impact of long covid in the same communities," said Dr. Rhoads.
McCone says everyone needs to understand the risks of long COVID.
"If I knew there was an up to one-and-five chance I could come down with a new chronic health condition with infection, I would have absolutely adjusted my behavior, and I think millions of Americans will as well," McCone said.
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