Four in 10 Minnesotans who contracted COVID-19 reported in a new state survey that they struggled with lingering health problems like fatigue and brain fog for months after their illnesses. For some, the symptoms never went away.

Everyday tasks such as getting dressed, going to work or simply concentrating were more difficult for this population, according to survey results released Friday by the Minnesota Department of Health. The survey shows the enduring toll of COVID, almost five years after it first emerged in Minnesota.

"The reality is, COVID is still with us," said Kate Murray, supervisor of the state's long COVID response program. "I've got several friends who have it right now. And for people with long COVID, they don't get to just walk away from it and close their ears. It's still impacting their lives."

Long COVID is federally defined as symptoms lasting three or more months beyond initial COVID illnesses. Some patients with long COVID get better on their own, or with medical treatments and lifestyle changes, but others appear stuck with chronic disorders. It remains unclear why this happens, but researchers suspect that the COVID virus reprograms the immune system to mistakenly attack the body.

Hannah Franklin stopped working last October after four COVID illnesses, the second of which sparked long-term symptoms, including forgetfulness and waves of exhaustion. She said she tries to cram in chores, activities and exercise in days when she has energy, but sometimes all that does is accelerate the next bout of exhaustion.

"I'm actually going through a crash right now," the 38-year-old St. Paul woman said in an interview Tuesday. "I just got out of bed to make myself something to eat, and it's 2 o'clock. Those are kind of how my days go. I just try to do as much as possible when I feel better."

The state survey isn't a reliable indicator of how many people have had long COVID in Minnesota. Surveyors called 20,000 Minnesotans in 2023 who had confirmed cases of COVID in 2021 or 2022, but only 1,270 answered questions.

Some people just don't pick up phones anymore, Murray said. Others didn't want to reflect back on COVID and one of the most turbulent eras in state history. Those that volunteered, on the other hand, included people with long COVID who felt marginalized and ignored.

"Some people, we almost couldn't get them off the phone because they wanted to talk about their experience so much," said Murray, adding that long COVID "is becoming a new disability" in severe cases.

The bimonthly Household Pulse Survey by the Centers for Disease Control and Prevention estimated that 16% of Minnesota adults have had long COVID, and that almost 5% had active cases in late summer 2024.

Minnesota's survey builds on those findings by showing how much long COVID affects daily life. Household chores were difficult for 35% of Minnesotans after their COVID illnesses left them with long-term symptoms, the state survey showed. Only 7% of Minnesotans reported similar limitations if they had no long-term symptoms after their initial COVID cases.

Dr. Farha Ikramuddin said she continues to offer hope to patients in M Health Fairview's Adult Post-COVID Clinic, because she has seen some get better, even after nine to 16 months.

Sometimes, it takes lifestyle adjustments such as better exercise and diet to kick-start improvements, she said, but medical options exist as well. She recently tested the placement of a nerve stimulator on the abdomen as a treatment for certain forms of long COVID, and is about to publish her findings.

Other patients have made little progress after three years, she said. "Some researchers have referred to long COVID itself as an aging process, that it ages you."

Age was definitely a risk factor for COVID severity during the pandemic. More than 16,000 deaths of Minnesotans have been linked to COVID, and 84% involved people 65 and older. Long COVID by contrast has emerged among working-age adults, Ikramuddin said, although that's partly because symptoms such as fatigue get overlooked among the elderly as natural consequences of aging.

"You put it on someone who is maybe 35, running around with two to three kids, balancing their work life and their home life and their family life, and you give them fatigue and brain fog?" she said. "That's going to raise havoc on their qualify of life."

Fewer new long COVID cases are coming to Ikramuddin's clinic, which she said is expected now that many people have been exposed to the coronavirus multiple times and the virus itself has mutated and in some cases become less virulent.

Murray said Minnesota will continue its long COVID surveillance. COVID patients in McLeod County helped the state develop a new survey that will track changes over time in the number of people struggling with the condition.

Doctors have reported challenges in diagnosing and treating long COVID, so the state also has convened a medical advisory council to help them. The council's first report was just released on whether COVID treatment with the antiviral drug Paxlovid can reduce risks of long COVID.

Vaccination was associated with better odds for avoiding long COVID, according to the state survey of people who endured the illness in 2021 or 2022. Only 37% of respondents reported lingering symptoms if they had received the initial COVID vaccine plus a booster dose before they got sick. Among unvaccinated Minnesotans who had COVID, 53% reported long-lasting symptoms.

Vaccines didn't become widely available to all age groups in Minnesota until spring 2021, so the unvaccinated respondents included people who got infected before they had that option.

Franklin wasn't vaccinated at the time of her second COVID illness that resulted in lingering symptoms. She said the vaccine seemed to lessen the impact of her next two COVID episodes.

Franklin said she has tried to help the search for treatments by participating in research studies, but also has been trying supplements and other remedies suggested by friends she has made on social media forums about long COVID. She isn't dreaming of a cure at the moment, just something that will lengthen the stints of energy and shorten the episodes of exhaustion.

Lunch on Tuesday was underwhelming, because foods such as chicken don't taste quite right anymore, she said. "I just had some berries and they're just bitter. Ugh. I don't think that is how berries should taste. Could be the berries, could be my taste buds! How do you know for sure?"