Spreading knowledge about post-COVID-related disease
Ethan Hartle and his family – his two sisters and his mother and primary caretaker, Sherrlyn – have made it their mission to spread awareness about a debilitating disease called Myalgic Encephalomyeltis/Chronic Fatigue Syndrome (ME/CFS).
ME/CFS affects millions of people worldwide but is often undiagnosed or misdiagnosed. The condition is more common than many well-known diseases but receives very little funding compared to illnesses such as Parkinson’s. According to the Centers for Disease Control, about 90 percent of people suffering from ME/CFS have not been diagnosed. Yet COVID-19 is bringing more attention to the disease, as about 25 to 30 percent of those post-COVID are suffering from a post-virus illness, many of which meet the criteria for ME/CFS.
Ethan Hartle, a 20-year-old Grimes, Iowa, resident, received his diagnosis of ME/CFS in September 2018. Before then, Ethan felt like he had the flu, and although his respiratory symptoms went away, his extreme fatigue did not.
A passionate cross country and track runner, Ethan continued to try running and other activities, which likely led to his increased severity. When Ethan pressed through his fatigue, he actually caused his body to “crash,” meaning he’d depleted his energy bank. Post-exertional malaise is a hallmark symptom and refers to a worsening of ME/CFS symptoms after minimal physical or mental exertion, which can be delayed 24 to 72 hours or more.
“The main message we want in spreading awareness is to share with anybody who’s post-COVID, if they happen to notice some of these symptoms, especially after they do an activity, don’t push through it,” Sherrlyn says. “ME/CFS is not your typical deconditioning, so get in touch with a knowledgeable doctor.”
Ethan’s case is so severe that it’s difficult for him to move and has left him primarily bedridden; he hasn’t stood or walked since February 2019.
“One in four people become house- or bed-bound with this disease,” Ethan says. “Unfortunately, I am one of the 25 percent.”
He also experiences brain fog that affects his concentration, making it challenging for him to read or have lengthy conversations. And even though Ethan’s body produces inadequate energy, he suffers from insomnia and non-restorative sleep.
While there is no cure or treatment plan for ME/CFS and very few experts on the disease, the pandemic has brought more focus to it, including a new test in a clinical phase that could possibly help with diagnosis.
“That would be a great first step,” Ethan says.
Ron Davis, a scientist at Stanford University whose son has ME/CFS, is also making headway in researching a cure for the disease. Another young woman who’s studying the condition is especially close to home – Ethan’s sister.
Megan Hartle, a pharmacy student at Drake University, will research COVID long-haulers this summer with Dr. Lucinda Bateman, who founded the Bateman Horne Center in Utah, which has “a committed vision to advance the diagnosis and treatment of ME/CFS,” among other diseases.
Ultimately, both Ethan and Sherrlyn hope that spreading awareness will prevent others from receiving a severe ME/CFS diagnosis.
“If we can keep somebody else from ending up as severe as Ethan, then it’s all worth it,” Sherrlyn says.
And amidst the trials and tribulations, Ethan has found joy in the small things. He loves listening to music, cuddling with his two cats, and visiting with friends and family who come to visit his window at home.
Looking to the future, Ethan has faith in brighter days ahead.
“There’s definitely hope out there, but that doesn’t make it any less hard.”