"I was a healthy 30-year-old firefighter paramedic working out five to six days a week. And this is how COVID affected me," said Karyn Bishof, founder of the COVID-19 Longhauler Advocacy Project.
Karyn Bishof was diagnosed with COVID-19 in March of 2020. She had a moderate case and was never hospitalized. But now, more than a year later, she says lingering symptoms are so bad she can no longer work.
"I'm still dealing with over 60 different symptoms," she said. "I've had a headache every single day at a level of seven out of 10 or higher... I don't sleep. I maybe average, you know, 20 to 25 hours a week of sleep... my feet and my legs swell and turn purple."
Bishof is a long hauler — a group that experiences symptoms long after recovering from the coronavirus.
And public health experts warn long COVID is the next big health emergency in the wake of COVID-19.
"It is a concerning problem because so many people have gotten sick that even if only a small fraction have persistent disability or medical problems, that's still a lot of people in the U.S. and globally," said Dr. Jesse Goodman, professor of medicine and infectious diseases at Georgetown University.
There's no official count of long haulers in the US. A recent CDC study found two-thirds of non-hospitalized COVID-19 patients went back to their doctors seeking relief from symptoms up to six months after contracting the virus. A new Stanford University study finds it’s even higher for those who were hospitalized.
In February, the NIH launched a $1.15 billion initiative to study and collect data on long COVID, its causes and possible treatments. The four-year program is only in the beginning stages.
"Ideally, this would have come many months earlier and we have more of that data now," Goodman said.
Democratic Congressman Don Beyer of Virginia has introduced a $90 million bipartisan bill. It would create a patient registry where long haulers could self-report their symptoms and treatments that have worked for them. And it would provide the CDC with funding to educate medical providers and the general public about long covid.
"Getting lots of dialogue and a sense of community with other people who suffer from long covid can give people, first of all, sense that they're not crazy and a sense of hope and a sense of how the disease unfolds and what other people do to get better," Beyer said.
It could also help bolster the case for continued financial aid as the country recovers from the pandemic.
"As we develop this much larger database of long COVID symptoms, it gives us a much better policy argument to extend unemployment benefits to the people that have long COVID," Beyer said.
Those benefits are essential for long haulers like Bishof, who says she has to spend most of her day in bed.
"If you're out of work, people are losing their homes, they're losing their cars, they're falling behind on bills and credit cards," Bishof said. "Changing the qualifications for some of these programs like food stamps or like Medicaid, allowing these people to obtain medical coverage and obtain at least the basic needs to provide for them and their families during this interim time is imperative."