SALT LAKE CITY — The COVID-19 pandemic has brought more attention to several chronic diseases that can develop after people suffer viral infections, advocates of the conditions say.
Utah patients and advocates of the post-viral conditions gathered for a "#MillionsMissing" virtual event over Zoom Wednesday.
A diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome, also known as ME/CFS, or fibromyalgia can mean people are missing from their own lives due to the symptoms of their disease, according to the Bateman Horne Center, a Salt Lake City clinic dedicated to supporting patients and studying the conditions.
About 80% of people who are diagnosed with those conditions contract them after suffering a viral illness, according to the Bateman Horne Center. Dr. Lucinda Bateman, the center's medical director, recently published research estimating that up to 10% of people who experience long-term symptoms from COVID-19 could go on to develop a chronic illness.
Bateman said even though the pandemic has been difficult, she is hopeful that COVID-19 might bring more attention and awareness to the chronic conditions.
"I've had a hard time being discouraged this past year. I just keep getting more and more hopeful," she said.
Participants in Wednesday's event held up pairs of shoes along with messages of hope and support to commemorate people who are missing from their lives due to a chronic illness such as ME/CFS or fibromyalgia.
Several patients were invited to read poems about their experiences with their illnesses.
Lisa O'Brien, a self-styled COVID-19 "long-hauler" who experienced long-term symptoms after being diagnosed with the disease, said long-haulers share a lot in common with people who suffer from ME/CFS.
"Like you, we've been fighting to be heard," she said during the event.
O'Brien was diagnosed with COVID-19 in March 2020 and experienced symptoms long after two weeks, when most people who contract the disease have recovered. But people wouldn't believe her and didn't take her seriously when she said she was still sick.
Six weeks into her COVID-19 diagnosis, she found other people who were going through the same thing, and she founded a Utah COVID-19 long-haulers support group.
It was almost a year before she was finally diagnosed with a chronic illness, O'Brien said.
That felt like an eternity for her, she said. But she now knows she was lucky to get diagnosed within that time frame, because it often takes much longer for patients to get a diagnosis for such an illness, O'Brien added.
If only one good thing comes from the COVID-19 pandemic, O'Brien said she hopes it will be more awareness and research into ME/CFS, fibromyalgia and other chronic post-viral conditions.
She thanked the Bateman Horne Center for their work in the field.
"We would seriously be lost without this support, so thank you," O'Brien said.
The Bateman Horne Center is continuing to research and collect data related to ME/CFS, fibromyalgia and long-term COVID-19, said Dr. Suzanne Vernon, the center's research director.
The center is studying long-term COVID-19 and how it relates to people who are otherwise healthy, Vernon added. There are also three ongoing clinical trials at the center related to studying fibromyalgia, she said.
"We're very busy and excited about all the research that is going on," Vernon said. "It's kind of sad that it took a pandemic to bring fibromyalgia and ME/CFS to the forefront… but that's the silver lining of the pandemic."