An early 2020 run-in with COVID-19 changed Andy Flosdorf’s entire life.

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, ‘You’d have been better off having a heart attack. At least that we can do something about that,” Flosdorf said.

“It was really terrifying.”

ME/CFS can be contracted after a range of viral infections. It’s been around far longer than COVID-19, but its symptoms, in recent years, have been recognized as one of the more severe cases of long COVID.

Flosdorf says it impacts his memory and has kept him out of work and from doing about 90% of what he used to, which can be isolating.

It’s both “frustrating” and “it can be very lonely,” he said.

“So if I’m going out like to be part of this discussion today,” he said, referring to the interview, “I have planned for that for quite some time. I took my shower and cleaned yesterday so that I wouldn’t have to do that today, so that I would have more energy today for this discussion.”

Billy Hanlon was in the same boat as he arrived with Flosdorf for an interview. Hanlon is the director of advocacy and outreach at the Minnesota ME/CFS Alliance. He, too, has the diagnosis.

“Hard to pronounce, harder to live with,” he joked, adding, “We don’t know the cause. And obviously, there’s no cure.”

Hanlon developed the disease in 2017 after a run-in with a different viral infection. Since then, he says he’s been fighting for answers like clear diagnostic tests and proper treatment that might provide some relief.

“We know the chronic consequences of infectious disease has been in the scientific literature for over 100 years. But for a variety of reasons, unfortunately, they’ve been very under-resourced, very underfunded, very under researched and highly overlooked,” Hanlon said.

ME/CFS “has been relegated to the margins of medicine when you don’t have money and funding allocated for it,” he added.

Hanlon and Flosdorf say if there’s a “silver lining” to the pandemic, it’s an increased effort to understand the disease which has become intertwined with long COVID.

“It is slow, it will be slow moving,” Hanlon said, referring to long COVID research efforts. “But the frustration is that it’s taken this event to really bring [ME/CFS] to the public’s attention.”

Kate Murray is the program manager of the long COVID program at the Minnesota Department of Health.

Earlier this year, the Minnesota Legislature invested an ongoing $3.146 million a year to address the post-COVID illnesses that have affected about 12% of Minnesotans since 2020, she said.

“And it’s a subset of that percent that would have the really severe long COVID that can be debilitating or impact quality of life,” Murray added.

When asked, she said doctors don’t currently have the tools necessary to diagnose and treat long COVID.

“We don’t have a single diagnostic test that can very easily show someone has long COVID. And actually, some of the kind of usual tests that doctors might run will come back normal. It doesn’t mean that there’s not something going on, it just means that we’re not looking in the right place, or looking for the right underlying causes. So that makes it really difficult,” Murray continued.

“It’s also tricky because there’s no cure yet.”

Asked when those living with long COVID might have some answers and potential treatments, she said, “I can’t put a timeframe on it, but I’m hopeful that we’re starting to get some glimmers of indication of what’s causing these conditions, how we can prevent these conditions and how we can support people who are being impacted while we wait for those answers.”

The Department of Health should have some initial data to share in a couple of months, Murray said.

Hanlon and Flosdorf said they hope progress in Minnesota spurs more at the federal level as funding for research wanes.

Hanlon invited anyone suffering from potential ME/CFS symptoms to get connected with the Minnesota ME/CFS Alliance and associated resources.