My fascination with viruses started when I was in high school after I read the book The Hot Zone by Richard Preston. Preston wrote about how the Ebola virus became the lethal killer that we know today. The slow evolution of Ebola fever and its rapid spread through Africa and eventually to the United States was a real-life horror story. I’ll admit that I never considered then whether or not I would live through a pandemic one day.

In early 2020, information about COVID-19 felt as foreign to me as the blood curdling effects of Ebola fever. We often try to understand new things by placing them in known boxes but initially, all I heard was that this respiratory virus wasn’t like the flu or other coronaviruses such as those that cause SARS or MERS. 

COVID-19 isn’t shrouded in as much mystery anymore. But there is one thing I still can’t wrap my mind around: long COVID. No matter how many booster shots I get, I’m still terrified that I’ll suffer long-term neurological effects like brain fog or experience sleep problems if I become infected. 

As a reporter, I frequently ask researchers about long COVID. Recently, one scientist described COVID as weird, and I was adamant about including her descriptor in my story. She wasn’t keen on the word though. She assured me that COVID wasn’t weird. Although we are still working to understand it, what we know so far isn’t so different from other viruses.

That conversation got me thinking; is long COVID really that “weird?” After some reading, I realized that long-term effects from microbial infections may not be as unique as I thought. In the New York Times column "Diagnosis," Lisa Sanders writes about unexplainable medical problems experienced by those who write to her hoping that readers may help find a solution. In a Netflix series by the same name, Sanders  walks through several cases and the possible diagnoses she posed.

In almost every episode, Sanders considered the possibility of Lyme disease, a bacterial infection transmitted through the bite of an infected tick that causes rashes, flu-like symptoms, and joint pain. If caught early, this disease can be cleared by antibiotics. Some patients, however, continue to experience symptoms after completing their antibiotic treatment, a phenomenon called post-treatment Lyme disease syndrome. I’ve read many patient stories describing their long journeys to receiving a diagnosis, stories often filled with doubting physicians who suggest that the symptoms are psychosomatic or stress induced.

Some suspect that post-treatment Lyme disease syndrome is actually a microbial infection induced autoimmune disorder of sorts. Researchers have posited the same about long COVID-19, even finding similar immune profiles to patients with systemic lupus erythematosus. As I dug further, I discovered that lingering symptoms after initial infection from viruses, including the 1918 Spanish flu, are documented and known as post-viral syndrome. Similarly, patients complain that their long-term ailments aren’t taken seriously. 

As a former scientist who once dreamed of working for the CDC, I was unaware of the potential long-term symptoms associated with microbial infections. The focused effort to understand long COVID may draw attention to other disease long-haulers and lead to ways to ease the long-term effects of other post-infection syndromes as well.

For a deeper look into long COVID and the research surrounding it, check out “COVID-19 may trigger an autoimmune response” and its related infographic in our October 2021 issue.