Salt Lake City – The COVID-19 outbreak is raising interest for a number of chronic diseases that can arise after people become infected, condition advocates say.
Utah patients and post-viral disease advocates gather for a virtual reality event. “#MillionsMissing” at Zoom Wednesday event
A diagnosis of muscle encephalitis / chronic fatigue syndrome, also known as ME / CFS or fibromyalgia, can mean someone who is missing out on their own lives due to their symptoms, according to the Bateman Horne Center, a clinic in Salt Lake City. Dedicated to supporting the patient and studying the condition
About 80% of people diagnosed with these diseases contract them after suffering viral illnesses, according to the Bateman Horne Center, published by Lucinda Bateman, the center̵7;s medical director. Recent research estimates that up to 10% of people with long-term symptoms from COVID-19 may have a chronic illness.
Bateman said although the outbreak was difficult. But she hopes that COVID-19 will pay more attention and awareness to chronic disease.
“Over the past year, I had a hard time frustrating, I just had more and more hope,” she said.
Wednesday’s event participants held a pair of shoes with a message of hope and support to remember those who had lost their lives due to a chronic illness such as ME / CFS or fibromyalgia.
Many patients are invited to read poems about their illness experiences.
Lisa O’Brien The COVID-19-style “hikers” who have had long-term symptoms after being diagnosed with the disease said hikers were highly involved with people with ME / CFS.
“Like you, we fight to be heard,” she said during the event.
O’Brien was diagnosed with COVID-19 in March 2020 and had symptoms lasting two weeks later when most of the people with the disease had recovered. But people didn’t believe her and took her seriously when she said she was still sick.
Six weeks into her COVID-19 diagnosis, she met others who were experiencing the same problem, and she formed a COVID-19 hiking support group in Utah.
It was almost a year before she was finally diagnosed with the chronic disease, O’Brien said.
That felt like an eternity for her, she said. But she now knows she’s lucky to be diagnosed within that time frame, as patients often take much longer to diagnose it, O’Brien added.
If only good things come from the COVID-19 epidemic, O’Brien said she hopes there will be more awareness and research on ME / CFS, fibromyalgia and other chronic post-infection conditions.
She thanked the Bateman Horne Center for her contributions to the field.
“We would have lost seriously without this support, thank you very much,” O’Brien said.
The Bateman Horne Center is conducting long-term research and gathering of data related to ME / CFS, fibromyalgia and COVID-19, said Dr. Suzanne Vernon, the center’s research director.
The center is studying COVID-19 long-term and how it relates to healthy people, Vernon added.There are also three more clinical trials at the center that involved studies on fibromyalgia, she said.
“We are very busy and excited about all the research that is going on,” said Vernon. “It’s sad that it takes a pandemic to bring fibromyalgia and ME / CFS to the forefront … but that’s the spread of the epidemic.”
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