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Arizona universities push for long COVID answers as symptoms persist in millions

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PHOENIX — As the number of COVID hospitalizations reach record lows, doctors are shifting their focus to long COVID.

Some studies estimate the lingering, often debilitating symptoms, impact 30% of people who catch the virus. Sometimes the headaches, dizziness, irregular heartbeat, fatigue, and other issues dissipate after a couple of weeks. Some people, though, are still battling the virus' aftereffects more than two years later.

"I was working full time when the pandemic hit. I worked out every single day," said Nicole Walgren.

When the 32-year-old Arizona native caught COVID-19 in June of 2020 though, everything changed.

"At first, I lost my taste and smell and I thought that was going to be it," she said.

Weeks later though, her symptoms changed and got much worse.

"I couldn't walk to the bathroom, my breathing was [so] labored. My joints and bones hurt so bad that even going to do laundry wiped me out for the day. I actually had to move in with my parents because I couldn't physically take care of myself during that time," Nicole recalled.

Like so many who suffer from long COVID, Nicole went to see specialists to address her variety of symptoms.

"I had chest X-rays. I did a pulmonary stress test at the hospital. I went to a cardiologist. I had a sonogram test. I went to a regular doctor. All my tests kept coming back 'fine,'" said Nicole. "It made me feel crazy."

Nicole said there were days where she felt like she might die.

Bill Toogood understands that feeling all too well.

"My headaches became so severe I was convinced there were nights where I wasn't going to wake up. I mean, it was that bad," said Toogood.

The 59-year-old from Tucson is now approaching two years with long COVID.

Like Nicole, he has dealt with a wide array of symptoms -- pain, fatigue, headaches, dizziness, brain fog, and an irregular heartbeat, to name a few. He also lost his job helping house families whose children were hospitalized in Tucson.

"I'm still not working," said Bill. "I applied for disability last November. I don't know how I'm going to get back to work, feeling the way I'm feeling. I just don't have it in me to put in a 40-hour week."

BIll is participating in two long COVID studies, led primarily by the University of Arizona.

"In the CoVHORT study we ask a lot more questions about household and work experience...Whereas the 'Recover' study is much more focused on the individual patient and their clinical outcomes," said Dr. Kristen Pogreba Brown, a professor and researcher with the University of Arizona.

Dr. Pogreba Brown says the amount of people afflicted by long COVID is staggering.

"Our study for CoVHORT is largely made up of non-hospitalized people, and we're still seeing rates of long COVID well over 30%," she said.

If those numbers hold true nationally, it would mean roughly 24 million Americans have some form of lingering symptoms.

Unfortunately for the victims of this virus, the current treatment options are untested and scarce.

Many people are linking up on Facebook groups and other social media to discuss remedies, helpful tips, and encouragement.

"There were hundreds of thousands of people in one group," said Nicole, who estimates the numbers have ballooned since she last checked.

"It's important to believe people who say they have long COVID," Nicole continued. "It's something that I really didn't want to share with a lot of people. But I relied heavily on other people's stories, so I felt like it was my duty to share mine too, because it made me feel less alone and less crazy. "

If you would like to participate in the Recover COVID study, you can register here.