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SALT LAKE CITY — People in a Zoom meeting on Wednesday held up messages of hope and support, alongside shoes.
The shoes represented a part of their life that they are missing due to a chronic illness — including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia or COVID-19 post-viral syndromes, called long-COVID.
The event, hosted by the Bateman Horne Center, celebrated the annual awareness day for ME/CFS and fibromyalgia, which is on Thursday, and considered how the pandemic has led to more attention and research for chronic illnesses. It was one of over 100 worldwide events with the theme "millions missing," noting that millions of people are missing from their lives and communities because of chronic illnesses.
"The past two years have been extraordinary, and we are still living with the aftershocks of the pandemic," said Rob Ence, executive director at the Bateman Horne Center. "In the midst of what might feel overwhelming to everyone, there are opportunities of discovery and research and clinical applications that will prove vital to our foundation of knowledge."
Ence said Gov. Spencer Cox will be declaring Thursday ME/CFS and Fibromyalgia Awareness Day in Utah, which is also recognized internationally.
Amy Cuddeback, a mother who lives with a chronic illness, shared a poem likening the illness to an invisible beast that, once awake or irritated, can cause pain for days or months.
"Seeing the world outside my room is like climbing Mount Everest — exciting, but oh so exhausting. I give it my all and I get demeaning glares from passersby, because they can't see the debilitating cruel beast," her poem said. "I desperately reach out to my support; family, friends and providers. Believe me, help me as I live with this beast. Please see me and encourage me to keep being the warrior that I am."
Although the virtual call was centered around illnesses that are holding many of the participants back, the event was very hopeful. The chat was flooded with messages of love to people who shared poems and messages. The meeting was also hopeful because the community has received more awareness due to long COVID-19, and sees hope for more beneficial research.
Dr. Lucinda Bateman, founder and medical director at the Bateman Horne Center, said the center recognized COVID-19 was causing chronic symptoms and it was able to hire two additional providers specifically trained to work with COVID-19 post-viral syndrome.
Bateman said she thinks the center's research into post-COVID-19 symptoms is benefiting everyone, including people with other chronic illnesses.
"I have just become more and more convinced of how important it is," she said.
Bateman, an expert in ME/CFS diagnosis, said once the research began, it became clear results would help people with ME/CFS and related conditions. She said governments around the world that are putting money toward understanding consequences of COVID-19 are asking questions similar to ones they have asked for years at the center, heightening awareness of all post-viral syndromes.
Bateman is a co-author of a paper that found between 10% and 20% of people with COVID-19 develop long COVID, or Post-Acute Sequelae of COVID-19; and, of those people, an estimated 10% will develop ME/CFS, which typically follows an infection of some kind.
Bateman is part of a monthly webinar learning program to provide primary care providers with information about ME/CFS and long COVID-19. She said about 75% of the physicians came in with expertise in long COVID-19, but have since become experts in ME/CFS. She is speaking at one of these webinars on Thursday in honor of the awareness day.
"There's a change, a big change," Bateman said.
Dr. Brayden Yellman, a board-certified physician in internal medicine and rheumatology at the treatment and research center, said research into long COVID-19 is giving them an opportunity to see what the early stages of ME/CFS look like, since people with long COVID-19 are getting help earlier than people diagnosed with ME/CFS ever did.
"In some senses, we're learning more about the illness in ways we never have before," Yellman said.
Now, when someone goes into the emergency room and says they have ME/CFS, he said, doctors are more likely to have heard about it.
Lisa O'Brien, who runs the Utah COVID-19 Longhauler's group — which now has over 4,400 members — said she got a mild case of COVID-19 in March 2020 and that she "no longer felt safe in (her) own body," and considered sleeping in a car outside the emergency room. At the time, she had not heard of post-viral syndromes and neither had the doctors she worked with during the first year. She said she is fortunate to have found the Bateman Horne Center.
"While I've improved greatly over the last couple of years, I've never been the same as I was before I got COVID," she said.
She thanked the chronic illness communities for sharing insights that have helped people with long COVID-19 adjust to their illness.
"There's far more hope and greater strength when we stand together," O'Brien said.
Dr. Suzanne Vernon said the pandemic led to a "generational opportunity" for scientists to turn something horrific into something positive by bringing understanding to post-viral illness.
"We're one of the handful of experts in the world that understands ME/CFS and understands post-viral illness. And I think it's just going to be an incredible opportunity to benefit, not only the people that have long COVID, but our our ME/CFS and fibromyalgia patients that started the same way or a similar way," Vernon said.
Tahlia Ruschioni, Bateman Horne Center education director, helped create a guidebook for patients to address the crash cycle, which she said was the biggest struggle she saw her sister go through. She said every time her sister crashed, she would get more sick than she was before.
"I think one of the biggest things that we can do as a center is give both patients and providers and their care partners tools to help support them in their care," Ruschioni said.
She told everyone in attendance with a chronic illnesses that hearing from them and their involvement in research and education is crucial.
"You were just as much a part of this as we are," Ruschioni said.
