Mayo Clinic to play key role in new nationwide program studying COVID-19 long-haulers

Mayo Clinic will play a key role in a new nationwide program that aims to help COVID-19 long-haulers.

The National Institutes of Health just launched the RECOVER initiative, awarding $470 million to support large-scale studies on the long-term effects of the virus.

Tens of thousands of COVID-19 survivors will be part of the national study population. The NIH said combining new and existing research into one project will help accelerate the timeline of understanding and treating long-haulers.

Jolene Wieneke in Adrian, Minn., tested positive for COVID-19 in November 2020 and has dealt with a long list of strange and sudden medical issues ever since.

"It’s very frustrating to not have answers," Wieneke said. "My general practitioner has been great but she just doesn’t know what else to do with me."

Wieneke said her long-hauler symptoms include shortness of breath, fatigue, tachycardia, brain fog, dizziness, internal tremors, intermittent low-grade fevers, insomnia, numbness and tingling all over her body.

She has seen multiple specialists, including neurologists, neuropsychologists and an ophthalmologist.

Wieneke said she suffers from vision problems and extreme light sensitivity, forcing her to wear two pairs of sunglasses when she goes outside.

"It’s frustrating when you used to have a certain physical level and a certain mental level and it’s gone. You’re hoping you can get it back," Wieneke said.

Studies through the RECOVER initiative will include children and adults, as well as pregnant women and their newborns.

Researchers will evaluate tissue samples from patients, look at autopsies, analyze data from millions of electronic health records and use smartphone apps and wearable devices to gather real-world data from COVID-19 survivors in real-time.

Mayo Clinic in Rochester is one of three core sites for the program, alongside New York University and Massachusetts General Hospital.
Mayo was awarded $40 million to collect, curate, store and distribute clinical samples.

"I will be so elated if there’s help out there somewhere, not only for me but for everyone else because the stories are just so heartbreaking," Wieneke said.

The RECOVER initiative plans to launch several clinical trials related to this research over the next few months.

Anyone who’s experiencing long-hauler symptoms and would like to volunteer for one of the studies can do so here.