An encounter with COVID-19 in early 2020. Andy Flosdorf’s lifetime.
Months later, he couldn’t shake what he called a “brain fog,” and in the fall, he was finally diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome, better known as ME/CFS.
It’s a debilitating disease associated with profound exhaustion, sleep abnormalities, pain and other symptoms that are worsened by any physical or mental exertion.
“The first thing [the doctor] said was, ‘It would have been better if I’d had a central attack. At least we can do something about it,” Flosdorf said.
“It was terrifying. “
ME/CFS can occur after a variety of viral infections. It has been around for much longer than COVID-19, but its symptoms, in recent years, have been identified as one of the most severe cases of long COVID.
Flosdorf says it’s affecting his memory and has prevented him from running and doing about 90 percent of what he used to do, which can isolate him.
It’s both “frustrating” and “it can be very lonely,” he said.
“So if I’m going out, I’d like to be a part of that discussion today,” he said, referring to the interview, “I’ve been making plans for this for a while. I showered and cleaned up, so I didn’t have to do that today, so I had more power for this discussion today.
Billy Hanlon was in the same boat when he arrived with Flosdorf for an interview. Hanlon is the Director of Advocacy and Outreach for the Minnesota ME/CFS Alliance. He also has the diagnosis.
“Hard to pronounce, harder to live,” he joked, adding, “We don’t know the cause. And, obviously, there is no cure. “
Hanlon developed the disease in 2017 after an altercation with another viral infection. Since then, he says he’s been fighting for answers like transparent diagnostic tests and the right remedy that can provide some relief.
“We know that the chronic consequences of infectious diseases have been discussed in the clinical literature for more than a hundred years. But, for a variety of reasons, unfortunately, they have received very little funding, very little funding, very little study, and very neglected. Hanlon said.
ME/CFS “has been relegated to the margins of medicine when there is no investment in it,” he added.
Hanlon and Flosdorf argue that if there’s a “silver lining” to the pandemic, it’s a greater effort to perceive the disease that has been largely linked to long COVID.
“It’s slow, it’s going to be slow,” Hanlon said, referring to the lengthy efforts of COVID studies. “But what’s frustrating is that this occasion was used to get the attention of the [ME/CFS] public. “
Kate Murray is the program manager of the long COVID program at the Minnesota Department of Health.
Earlier this year, the Minnesota legislature invested $3. 146 billion a year to fight the post-COVID pandemic that has affected about 12% of Minnesotans since 2020, he said.
“And that’s a subset of that percentage that would have long, very severe COVID that can be debilitating or have an effect on quality of life,” Murray added.
When asked, he said doctors lately don’t have the equipment to diagnose and treat long COVID.
“We don’t have a single diagnostic check that can easily show that a user has long COVID. And in fact, some of the same old checks that doctors might perform will return to normal. This doesn’t mean that there is nothing “This is happening, it simply means that we are not looking in the right position or looking for the right underlying causes. That makes it hard,” Murray continued.
“It’s also because there is no cure yet. “
When asked when other people living with long COVID might have answers and possible treatments, he replied, “I can’t put a time frame on it, but we’re starting to get hints of clues about what’s causing those conditions and how we can save them. “those conditions and how we can help those affected while we wait for those answers.
The Health Department has initial knowledge of the percentage in a few months, Murray said.
Hanlon and Flosdorf said they hope the progress made in Minnesota will further push the federal issue forward as investment in studies declines.
Hanlon invited anyone suffering from potential ME/CFS symptoms to get connected with the Minnesota ME/CFS Alliance and associated resources.
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