COVID-19 long-haulers search for answers as symptoms persist

A significant number of COVID-19 patients are dealing with symptoms long after their initial infection. They test negative for the virus, yet weeks to months later are still experiencing fatigue, muscle weakness or concentration difficulties.

They are called COVID-19 long-haulers.  It is not really clear why some people have these long-term coronavirus symptoms, but the lingering effects are impacting their lives.

Marcus Tomoff got sick with COVID-19 back in June. The 28-year-old tested negative for the virus in August, but about 115 days later, he’s still struggling.

“Since August 8, I’ve been in the hospital about 9 times. I’ve had to leave work several times,” Tomoff said.

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Tomoff said his heart rate soars out of nowhere; he has chest pains, body aches, extreme fatigue, and difficulty walking.  Some days he is fine, and other days are a struggle. Life is not the same, and no one can tell him exactly why these symptoms will not go away

“I don’t know how to even explain this in words. It’s just it’s been awful,” said Tomoff.

Tomoff joins tens of thousands of others who consider themselves COVID-19 long-haulers.  

Researchers estimate that about 10% of patients still suffer from an array of lingering symptoms weeks to months after recovering from the virus. But there’s not much information out there as to why.

“I don’t think we really have a good handle on why any one person would get these long-term symptoms from COVID-19 compared to any other person,” said USF Health's Dr. Michael Teng.  “It’s a difficult situation and that we really don’t have the answers. We are trying to study it and figure out how it works.”

The lack of answers, skepticism, and feeling of being dismissed by some doctors led Tomoff to form the "Florida COVID Longhaulers" Facebook group.  It is a place folks can band together, ask questions, and support each other.

In about three months, the private group has grown to about 540 members.

“There’s more of us then you realize, and just because you survive COVID doesn’t mean you’re fine, and that’s what a lot of people don’t understand,” Tomoff said.

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Specialized post-COVID clinics have opened across the country in recent months bringing together different physicians to focus on patients with lingering symptoms.

There are some theories about why people become COVID long-haulers, but so far, nothing concrete.

Learn more about the COVID-19 long-term effects on the CDC website.