Study shows long-haul COVID-19 patients average 15 months with symptoms

A recently published study of long-haul COVID-19 patients at the Northwestern Medicine Neuro COVID-19 Clinic indicates symptoms persist an average of 15 months.

The study also shows some initial symptoms, such as changes to taste and smell, improve more quickly, while other symptoms, like brain fog, numbness, blurred vision and fatigue dissipate more slowly. However, longtime patients also described developing new symptoms like variations in blood pressure and heart rates along with gastrointestinal problems as original symptoms persisted.

The study focused on non-hospitalized patients six to nine months after their initial visit to the clinic who reported mild symptoms from the initial infection.

The majority of patients were women and the average age of all 52 patients in the study was 43, said Dr. Igor Koralnik, chief of neuro-infectious diseases at Northwestern Medicine.

“It indicates it may be an autoimmune predisposition since women are more likely than men to develop autoimmune disease in general,” Koralnik explained.

Koralnik said it's as if the patient's body is attacking its own immune system because it has become “confused by the COVID virus.”

Wheaton resident Emily Caffee, a physical therapist and competitive rower, is a patient in the clinic and participated in the study as well.

She described her long-haul symptoms as a “roller coaster ride” into a “pit of emotional and physical despair.”

“The fatigue becomes absolutely crushing,” she said. “It took me at least 10 months to rebuild my life. I'm 90% to 95% better, but there are still some symptoms that linger.”

Caffee said she had to learn not to overexert herself or it would set her recovery back.

“I don't feel like my old self; I feel like kind of a different version of myself,” she said. “Recovery is possible, but be prepared for it to be very nonlinear.”

Patients at Edward-Elmhurst Health's Post-COVID Neuro Care Clinics report similar issues, said Dr. Nicholas Mathenia, head of neurology for the health system.

“What people may not understand is that our patients may get a mild case in January, but we don't see them until May or later on,” he said. “And like most medical treatments, this isn't a sprint, it's a marathon and you've got to prepare for this to take some time to get the symptoms under control.”

At Northwestern Medicine's clinic, patients are tested for a variety of cognitive skills and then undergo a “retraining process” as part of their therapy course, Koralnik said.

Koralnik's clinic has treated more than 1,400 patients throughout the U.S. since the outset of the pandemic.

Public health officials note the prevalence of long-haul patients is another reason to be cautious about exposure to the virus, even for those who are otherwise healthy and aren't at risk for severe outcomes of the infection.

Koralnik also noted that vaccinations neither appeared to help long-haul symptoms or exacerbate them.

“Vaccination didn't cure long COVID symptoms, but didn't worsen them either, which is a reason given by some long-haulers for not getting vaccinated,” he said. “As new variants emerge and the number of patients impacted by long COVID rises, we're now focusing our research on understanding the root cause of long COVID. We're also devising interventions to improve the management of those patients and find the best treatment options for them.”