No treatment, no cure: Patients wait for answers in long-running Covid-related debilitating disease.

Coming down with Covid-19 in early 2020 changed Andy Flossdorff’s entire life.

Months later, he couldn’t shake what he called his “brain fog,” and in the fall, he was finally diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, also known as ME/CFS.

It is a debilitating disease associated with severe fatigue, sleep disturbances, pain, and other symptoms that worsen with any physical or mental exertion.

“The first thing [the doctor] He said, ‘You’d better have a heart attack. At least we can do something about it, Flossdorf said.

“It was really scary.”

ME/CFS can be treated after a variety of viral infections. It is much longer than COVID-19, but its symptoms have, in recent years, been recognized as one of the more severe cases of prolonged COVID-19.

Flossdorf said it affected his memory and kept him out of work and unable to do 90% of his work, which can be isolating.

It can be both “stressful” and “very lonely,” he said.

“So if I’m going to participate in this conversation today,” he said in an interview, “I’ve been planning for that for quite some time. I took a shower and cleaned up yesterday so that I don’t have to do that today, so that I have more energy for this discussion today.

Billy Hanlon was in the same boat when he arrived for the interview with Flossdorf. Hanlon is the Director of Advocacy and Outreach at the Minnesota ME/CFS Alliance. He also has a diagnosis.

“Hard to say, hard to live with,” he joked, adding, “We don’t know why.” And obviously there is no cure.

Hanlon developed the disease in 2017 after contracting a different viral infection. Since then, he says, he’s been fighting for answers, such as clearer diagnostic tests and the right treatment that can provide some relief.

“We know that the chronic consequences of infectious diseases have been in the scientific literature for over 100 years. But for a variety of reasons, they are, unfortunately, under-resourced, very under-funded, very under-researched and largely neglected,” Hanlon said.

ME/CFS has been “relegated to the margins of medicine in the absence of money and funding allocated for it,” he added.

If there is a “silver lining” to the pandemic, Hanlon and Flossdorff say, it’s the effort to understand the disease long associated with COVID.

“It’s going to be slow, it’s going to be slow movement,” Hanlon said, referring to the lengthy Covid research effort. “But the disappointment is that this event has really taken off. [ME/CFS] For public attention.

Kate Murray is the program manager of the Minnesota Department of Health’s long-term COVID program.

Earlier this year, the Minnesota Legislature committed an ongoing $3.146 million investment to address post-Covid disease, which affects 12 percent of Minnesotans by 2020, she said.

“And it’s a subset of that percentage that has very severe COVID that can debilitate or affect quality of life,” Murray added.

When asked, she said that doctors do not currently have the necessary equipment to diagnose and treat long-term covid.

We don’t have a single diagnostic test that can easily tell if someone has prolonged covid. And in fact, some common tests that doctors can run will come back normal. It does not mean that there is nothing, that we are not looking in the right place, or that we are not looking for the right causes. So that makes it very difficult,” Murray continued.

“It is very difficult because there is still no cure.”

When asked when people living with Covid will have some answers and possible treatments, Long said, “I can’t put a time frame on it, but I hope we start to get clues as to what’s causing these conditions.” While we wait for those answers, how can we prevent these situations and how can we support people who are affected.”

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

Hanlon and Flossdorf said they hope Minnesota’s progress will be further boosted at the federal level as funding for research declines.

Hanlon invites anyone suffering from ME/CFS symptoms to get in touch Minnesota ME/CFS Alliance and related resources.