Little was known about COVID-19 when the virus started infecting millions of people. Misinformation and false correlations in the early days of the pandemic created further confusion.
Researchers are still learning and discovering what happens after a COVID-19 infection and what recovery may look like. Research shows that 4% to 7% of those who were infected with the virus around the world found themselves with symptoms of “long COVID” — fighting to find the right words, forgetting basic matters or struggling with confusion known as brain fog. Some experience phantom smells of rotten meat or smoke known as phantosmia. Long COVID can also include general fatigue and has connections to strokes.
On Wednesday’s St. Louis on the Air, Dr. Ziyad Al-Aly, clinical epidemiologist at Washington University’s School of Medicine, director of the Clinical Epidemiology Center and chief of research and development at the Veterans Affairs St. Louis Health Care System, said the medical community owes a lot to patients who shared their COVID recovery stories — even when their own doctors would not listen or did not know any better.
“I do remember very vividly, very early on in the pandemic … reading an op-ed piece by Fiona Lowenstein in the New York Times saying that, ‘Everybody was telling me at the time that if I was young and healthy, if I got COVID-19, I will get over it within a few days, maybe a week, and I’ll regain my health. Yet here I am. I'm still having lingering fatigue and shortness of breath and brain fog.’”
Al-Aly credits the Patient-Led Research Collaborative and other long COVID patient support groups for chronologizing their recovery. Now researchers are able to knowledgeably connect long COVID experiences with legitimate medical findings.
At the same time, Al-Aly lamented the gaslighting many patients have faced in getting treatment, or even acknowledgement from their doctors that their symptoms are real.
Long COVID “is real,” he emphasized. “Brain volume decreases after SARS-CoV 2 infection. There are structural changes that can happen to the brain. When people are telling me, ‘Oh, it’s just in their head,’ it’s actually true!”
For more on long COVID, listen to Dr. Zayid Al-Aly’s conversation on St. Louis on the Air on Apple Podcast, Spotify, Google Podcast, Stitcher, or by clicking the play button below.
“St. Louis on the Air” brings you the stories of St. Louis and the people who live, work and create in our region. The show is produced by Miya Norfleet, Emily Woodbury, Danny Wicentowski and Alex Heuer. Avery Rogers is our production assistant. The audio engineer is Aaron Doerr.
