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Doctors generally define long COVID as a post-acute condition that causes a wide range of symptoms for over a month after testing positive for the virus. Scientists have learned a lot in the past two years about how the disease operates and how to treat it, including the use of existing medication.

But some mysteries, like the condition’s biggest risk factors, still perplex scientists.

In the United States, more than 23 million people (430,000 in Washington) are estimated to have post-acute COVID symptoms, according to the American Academy of Physical Medicine and Rehabilitation, which uses COVID data from Johns Hopkins University. The estimate assumes 30% of survivors suffer from long COVID, a proportion based on a University of Washington study published in February 2021 that followed up with 177 COVID patients up to nine months after infection.

Many similar local research efforts across the country have included a couple of hundred participants. But a new, nationwide study, funded by the National Institutes of Health, is underway, with a plan to follow thousands of COVID patients over four years.

“It’s a huge problem,” said Dr. Janna Friedly, who directs UW Medicine’s post-COVID recovery clinic. “We really need on a national level more resources for these types of coordinated clinics for patients with long COVID. There’s obviously a huge demand and a very large, unmet need.”

The UW Medicine clinic has been seeing 150 to 200 new patients a month, in addition to about 200 more returning patients, Friedly said. Many considered themselves to be “very healthy” before they got sick, though some preexisting symptoms, like diabetes and hypertension, can put people at higher risk of developing long-term symptoms, she said.

And as the clinic gets flooded with new patients, some, like Daisy Sky Shangrow, have to wait months to get an appointment. Shangrow, 26, tested positive last September, and had to wait until December to see a clinic doctor.

“I was like, ‘Wait am I still going to be sick then?’ ” she remembers thinking.