University of Utah launches crowdfunding campaign to support COVID-19 long-hauler research

(Francisco Kjolseth | The Salt Lake Tribune) Lisa O'Brien is the creator of the Utah COVID-19 Long Haulers group, a support group for people who say they have experienced long-term impacts as a result of the coronavirus. O'Brien began experiencing COVID-19 symptoms after a trip to Hawaii in early March but never got tested because she didn't have the usual symptoms required for testing at that time. While doctors consider people who have survived for three weeks following a diagnosis as "recovered," O'Brien says she continues to experience excessive fatigue as well as blood clots and tachycardia months later.

As the number of Utahns experiencing long-term effects from the coronavirus continues to grow, there are still more questions than answers about why some people become “long-haulers,” how long they’ll be sick or how to treat their symptoms.

In an effort to resolve some of those questions, the University of Utah launched a crowdfunding campaign this week to raise $25,000 for research “to better understand the effects and evaluate best treatment options” for people with prolonged coronavirus symptoms.

“Many people experience long-term effects after having COVID-19,” the organization notes on its online donation portal. “For some, these effects may be worse than original symptoms with no end in sight. Little is known about COVID-19 long-hauler symptoms, the impact on health, or how best to treat. University of Utah Health is working hard to provide answers.”

Donors had chipped in just over $1,000 to the Giving Tuesday campaign as of Tuesday afternoon.

Nicole Frank, associate director of the University of Utah’s Immunology, Inflammation, & Infectious Disease Initiative (3i), said conversations about how to treat the state’s long-haulers have been ongoing since earlier this summer. But the effort to create a crowdfunding campaign kicked into gear after the organization received an anonymous $50,000 donation to support research on the long-term effects of COVID-19.

Frank said the U. hopes to raise an additional $25,000 to $50,000 through this donation push to fund a full-time research coordinator who would be dedicated to the long-hauler study.

And with research showing that a “significant portion” of the population could face long-term effects from the coronavirus, she said, “it’s in all of our best interest to figure out why that happens and how we can treat their symptoms.”

Utah’s best-known long-hauler is Lt. Gov.-elect Deidre Henderson, who tested positive for the coronavirus in August and has documented her uphill battle to recovery on Twitter.

The promise of a deep dive into the challenges long-haulers face gives “a lot of hope” to the Utahns who are experiencing symptoms that can range from extreme fatigue and shortness of breath to racing hearts and neurological issues, said Lisa O’Brien, who created the Utah COVID-19 Long Hauler group on Facebook this summer.

“We have no answers,” she noted in an interview. “Is this for the rest of our lives? Is this just like some post-viral syndrome that is going to last for a year or two? Do we ever go back to who we were? We’ve had those questions for months now. We’ve been crossing our fingers and praying for people to do this research.”

While older adults and people with preexisting conditions are at particular risk of negative impacts from the novel virus, the Centers for Disease Control and Prevention notes that “recovery from COVID-19 can take a long time, even in young adults with no chronic conditions.”

Some research has shown about 10% of patients face long-term impacts from the virus — a number that means there could be hundreds of thousands of long-haulers across the United States and upwards of 19,000 in Utah.

Dr. Anthony Fauci, the nation’s top infectious disease specialist, said in a recent interview with the American Medical Association that the percentage of patients who have prolonged symptoms could be even higher, at anywhere from 25% to 35%.

“It’s fatigue, shortness of breath, muscle aches, dysautonomia, sleep disturbances and what people refer to as ‘brain fog,’ which is a nonmedical way of describing a lack of ability to concentrate or to focus,” he said of the symptoms these patients are experiencing. “So there’s no doubt that that is going on. That can last anywhere from weeks to months and it might even be longer.”

The Utah COVID-19 Long Hauler Facebook group doesn’t reflect anywhere near the lower range of 10% of the state’s coronavirus patients who could belong to the long-hauler community. But O’Brien said the group has been seeing a rapid growth in its numbers, with a 92% spike in membership last month — a rise she attributes, at least in part, to a growing awareness of the possibility for prolonged symptoms as a result of the virus.

“More people are starting to know that we exist,” she said.

The rising numbers are also likely a reflection of rising infection rates in the state in recent months, as case numbers began frequently topping 2,000 or more new infections a day last month. Each day brings the possibility that new patients are realizing their symptoms extend far beyond the three-week period after which the Utah Department of Health considers patients to be “recovered.”

O’Brien said she believes the research planned at the U. will help those in the state’s growing long-hauler community. But she thinks it could also make a difference for Utahns who have been dealing with similar symptoms, such as dysautonomia and postural orthostatic tachycardia syndrome (POTS), for decades before the start of the coronavirus pandemic.

She also hopes further study can provide more clarity about the risks of the virus to Utahns who remain skeptical.

“People that are denying that this is real, they’re really basically just accepting this unknown risk, because we don’t really know who’s at risk for these long-term effects,” she said. “We just don’t have all those answers.”