No cure, no cure: Patients wait for answers about long-term, debilitating illness linked to coronavirus
The coronavirus disease (COVID-19) outbreak in early 2020 changed Andy Flossdorf's entire life.
After several months, he couldn't shake off what he calls “brain fog,” and in the fall he was finally diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, better known as ME/CFS. Ta.
It is a debilitating disease with symptoms that are exacerbated by extreme fatigue, sleep abnormalities, pain, and other physical or mental exertion.
“The first one [the doctor] What he said was, “I should have had a heart attack.'' At least we can do something about it,” Flossdorf said.
“It was really scary.”
ME/CFS can develop after a variety of viral infections. Although it has been around much longer than COVID-19, its symptoms have recently been recognized as one of the more severe cases of long-term COVID-19.
Flossdorff said it has affected her memory, left her unable to work and do about 90% of the things she used to do, and can make her lonely.
It's “frustrating” and “can be very isolating,” he says.
“So if I want to participate in this discussion today,” he said, referring to the interview, “I've been meaning to do it for quite some time. I took a shower and cleaned yesterday, and I don't need to do that today. So that we can spend more energy on this discussion today.”
Billy Hanlon was in the same situation when he and Frosdorf arrived for an interview. Hanlon is director of advocacy and support for the Minnesota ME/CFS Alliance. He has also been diagnosed.
“It's hard to pronounce and it's hard to live with,” he joked, adding, “I don't know the cause.” And clearly, there is no cure. ”
Hanlon developed the disease in 2017 after encountering another viral infection. Since then, she has been fighting for answers to alleviate her symptoms, including clear diagnostic tests and appropriate treatment.
“We know that the chronic effects of infectious diseases have been described in the scientific literature for over 100 years. Unfortunately, for a variety of reasons, they are extremely under-resourced. , very underfunded, very under-researched, very neglected,” Hanlon said.
ME/CFS has been “relegated to the margins of health care due to lack of funding and resources,” he added.
Hanlon and Frosdorf say that if there is a “silver lining” to the pandemic, it is increased efforts to understand the disease, which is intertwined with the lingering COVID-19 infection.
“It's going to be slow, and it's going to be slow moving,” Hanlon said, referring to long-term coronavirus research efforts. “But what's frustrating is that it took so long for this event to really produce results.” [ME/CFS] attract public attention. ”
Kate Murray is the program manager for the Minnesota Department of Health's long-running COVID-19 program.
Earlier this year, the Minnesota Legislature announced an ongoing $3.146 million annual investment to combat post-COVID-19 illness, which has affected approximately 12% of Minnesotans since 2020. she stated.
“And some of that proportion may develop really severe, long-term COVID-19 infections that can be debilitating and impact their quality of life,” Murray added.
When asked, she said doctors currently do not have the tools needed to diagnose and treat long-term COVID-19 infections.
“There is no single diagnostic test that can easily show that someone has been infected with COVID-19 for an extended period of time. And in fact, some of the routine tests doctors do will come back normal. “It doesn't mean there's nothing going on, it just means we're not looking in the right places or looking for the right root causes. So it's really difficult,” Murray continued.
“It's difficult because there's no cure yet.”
When asked when people living with long-term coronavirus infections will get some answers and treatments, she said: Let's think about how these situations can be prevented and how we can support those affected while we wait for answers. ”
of Ministry of Public Health Murray said he should be able to share initial data within a few months.
Hanlon and Frosdorf said they hope progress in Minnesota will lead to further stimulus at the federal level as research funding dwindles.
Hanlon invited anyone suffering from the potential symptoms of ME/CFS to connect. Minnesota ME/CFS Alliance and related resources.
