SALT LAKE CITY — Almost a full year into the pandemic, researchers are still learning about the long-term symptoms of COVID-19.
With the limited data to go off of early on, researchers like Dr. Jeanette Brown, an assistant professor at the University of Utah, had to turn to social media to learn how the virus affects the body.
"We were actually on Twitter with a lot of our colleagues in New York and Washington, saying 'Hey, what are you seeing?'" Dr. Brown said.
The lack of data also created problems when trying to treat those suffering from the long-term effects of the virus, like Lisa O'Brien.
"At first, there was a lot of dismissal, disbelief," O'Brien added.
She tested positive nearly 11 months ago and founded the Utah COVID-19 Long Haulers Facebook group to build a community, and help those like her find answers about their symptoms. Her focus now is on helping researchers learn more about the virus.
"We know what we're struggling with," O'Brien said. "We just need to find more researchers now to look into this and dig deeper."
Months after the onset of the pandemic, several studies have been published. One of the most recent surveyed 3,762 people internationally and found that patients were experiencing more than 200 different symptoms. Dr. Brown says the data helps researchers find patterns in how the virus is affecting people long-term.
"Then that gives us ways to generate hypotheses, or ideas, of what research needs to come next," Dr. Brown added.
These hypotheses in turn help doctors and medical professionals develop ways to treat patients moving forward.
"If we can confirm a mechanism of what's going on with this disease, you're then looking at treatment options," Dr. Brown said.
She and others are working to create a post-COVID clinic at the University of Utah.
"It's a place for us to practice the best care we know of currently," she added. "As new things come available, [we can] make those available for patients."
Another benefit of the clinic will be the addition of a bio-repository where researchers can collect and store samples from patients who've had COVID in the past.
"So that if one of our researchers gets a brilliant idea down the road, they just go back to the freezer pull those samples out and are able to correlate it with the clinical history as well," Dr. Brown added.
After dealing with the effects of the virus for almost a year, the new research and creation of post-COVID clinics give long-haulers like O'Brien hope.
"It just feels good to know that we're not being ignored anymore," O'Brien said. "That there are people that want to see us get better."
Dr. Brown said the post-COVID clinic at the University of Utah will be opening in the coming weeks. A fundraiser has also been set up to help researchers continue to gather data on COVID-19. She said the funds will allow researchers to gather enough preliminary data to then seek funding from the federal government.
To help facilitate the data gathering efforts, O'Brien is encouraging all those who've experienced any long-term symptoms from COVD-19 to participate in medical studies and surveys.