Northwestern study of long COVID patients shows how an app can track recovery

Grace Huffman-Gottschling tested positive for COVID-19 in 2022 and has suffered from long COVID ever since.

She had previously been diagnosed with polycystic ovary syndrome (PCOS), and the virus only worsened her condition. She experienced chest pain, extreme shortness of breath, fatigue and brain fog. She never made a full recovery.

During her treatment at Northwestern Medicine’s Comprehensive COVID-19 Center, she found that her respiratory symptoms started to improve. But when she underwent a cognitive test, she scored poorly. That’s when doctors asked her to participate in a new study looking at patterns of recovery from the neurological symptoms of long COVID.

“For me, a lot of my symptoms haven’t gone anywhere, and I haven’t really felt a whole lot better,” she said.

Many believe COVID symptoms gradually improve as the body fights off the virus, but when it comes to long COVID, the recovery process isn’t well understood. In a new study published in BMC Neurology, researchers report that even those who improve continue to see ups and downs that impact their quality of life.

Dr. Igor J. Koralnik, chief of neuroinfectious diseases and global neurology at Northwestern Medicine, authored the study. He oversees the Northwestern Medicine Neuro COVID-19 Clinic and is the co-director of the Northwestern Medicine Comprehensive COVID-19 Center.

“The first question patients ask us when they come to the clinic is, ‘When am I finally going to improve?’” Koralnik said. “Some patients have symptoms lasting for years, and that’s why we started this study.”

Anyone who was infected with SARS-CoV-2 can develop long COVID. Symptoms include brain fog, fatigue, dizziness, loss of taste and smell and trouble sleeping.

The study followed 63 patients for three months. The team of researchers had participants use a mobile app to log their symptoms and perceived improvement compared to their pre-COVID baseline.

The researchers then distinguished between patients whose symptoms improved and those who did not. At the end of the study, 43% of participants were classified as improvers, showing measurable improvement over the three-month period. The remaining 57% reported no improvement.

And where less than half of participants reported improvements, researchers found that improvement wasn’t linear.

“The people who improved over the three-month period had more variation and setbacks in their symptoms than those who did not improve,” Koralnik said.

Recovery was mixed, he said. Some days patients felt better and other days they felt worse. Those that saw a mix were deemed “improvers.”

The study also showed that women were less likely than men to improve. Participants who had changes to their senses of smell and taste were also less likely to improve.

Koralnik said participants classified as “improvers” also tended to perform better on cognitive tests and reported less sleep disturbances than those who did not improve. That suggests that addressing patients’ cognitive function and improving their sleep could be key to recovery.

Huffman-Gottschling said the app was easy to use, and it prompted her to categorize her daily symptoms.

Still, being a 27 year old living with long COVID in Chicago was taxing for her.

“It’s really hard to work and be out,” she said. “For me, I have to still mask at places, and so that makes it tough as well, because a lot of the world has moved on from that, and it can make it very, very, very isolating.”

Koralnik added that the findings challenge the conception that steady improvement equals healing.

He said the researchers are now using the app in a larger study “following patients for a one-year period, and we are also looking at biomarkers of long COVID.”

He hopes the larger study will tell researchers more about the root cause of long COVID and how they can better manage patients and treat their symptoms. Koralnik says the success of the app for long COVID could indicate that similar symptom trackers could be created for other chronic conditions.

“We can create other apps for other chronic diseases and empower patients on their often bumpy road to recovery,” he said.