New research from the Minnesota Department of Health (MDH) and a study in Germany highlight the ongoing struggles faced by individuals suffering from long COVID, also known as post-COVID-19 syndrome (PCS). Both studies underscore the long-term physical and cognitive toll of the condition, as well as the challenges in diagnosing and managing it.
In Minnesota, a first-of-its-kind survey conducted by MDH found that more than 40% of respondents reported lingering symptoms for at least three months after a COVID-19 infection. Of the 20,000 Minnesotans contacted for the survey, 1,270 completed interviews. The findings estimate that approximately 8% of the state's population-about 365,000 residents-have experienced long COVID.
"It is an official diagnosis. There's a diagnostic code that providers can use," said Kate Murray, MDH Long COVID Program Manager. However, she acknowledged the complexity of the condition. "Unfortunately, we still do not have a simple test for long COVID."
The survey identified fatigue, shortness of breath, brain fog, and coughing as the most common symptoms. Nearly two-thirds of those experiencing these symptoms reported difficulties performing daily life activities.
"Two-thirds of people having difficulty with daily activities is definitely significant," Murray said. "It is really important now we have some data to back up the stories that we've been hearing for years."
Despite its prevalence, only 9% of respondents had received an official diagnosis from a healthcare provider, highlighting gaps in medical recognition and support. "Providers can struggle with that for sure," Murray noted, adding that the lack of a definitive diagnostic test complicates care.
The findings from Minnesota align with a separate study conducted by researchers at Freiburg University in Germany, published in PLOS Medicine. The study followed 982 individuals with long COVID and 576 controls over two years. It revealed that 68% of people with PCS continued to experience persistent symptoms after two years, with little improvement over time.
The German study reported similar clusters of symptoms, including fatigue, neurocognitive disturbances, shortness of breath, and anxiety or depression. Notably, 35.6% of patients reported exercise intolerance with post-exertional malaise, which was associated with more severe outcomes and reduced quality of life.
Researchers found measurable deficits in physical and cognitive performance among those with long COVID. Patients demonstrated reduced handgrip strength, lower maximal oxygen consumption, and poorer ventilatory efficiency. Cognitive tests revealed impairments in memory, attention, and processing speed, though the study lacked pre-infection cognitive data for comparison.
"The results call for the inclusion of cognitive and exercise testing in the clinical evaluation and monitoring of patients with suspected PCS," the study's authors wrote, emphasizing the need for further research to identify factors influencing recovery or prolonged symptoms.
In both studies, risk factors for prolonged symptoms included severe initial COVID-19 infections, obesity, and lower educational attainment. The German study also noted that while patients exhibited grave symptoms of physical and mental dysfunction, there were no clear laboratory markers for PCS, complicating diagnostic efforts.
For patients, the challenges extend beyond health impacts. In Minnesota, Murray highlighted how the condition creates barriers to securing workplace accommodations, disability benefits, and other forms of support. "The systems in place can be very complicated," she said.
