Given Long COVID’s more than 200 documented symptoms, and research showing that even mild COVID-19 infections can cause lasting vascular, pulmonary, and neurological damage, scientists are still laboring to untangle various common features and their individual causes. 

“If we bunch everything together, it’s too complex,” says Akiko Iwasaki, an immunobiologist at the Yale School of Medicine in New Haven. Iwasaki has been seeking ways to divide patients into subsets. Without that, she says, “We can’t even identify the right patients for the right therapy.”

As they appear to be disproportionately affected by Long COVID, women’s insights can provide vital clues to possible causes, and help guide researchers to potential treatments. Here are five women who are working closely with scientists to help solve this extremely complex puzzle.*

An audio version of the article: https://curio.io/publications/bloomberg-businessweek/jason-gale/these-five-women-are-helping-doctors-crack-the-long-covid-mystery

Carrie Anna

Carrie Anna McGinn, 40, is a community health worker in Quebec City, Canada. Before getting COVID-19, she regularly enjoyed hiking in a nearby national park, but after contracting the virus, she began experiencing fatigue and an abnormally high heart rate just doing simple tasks. 

“It’s almost like I’m wrapped in a lead blanket,” she says. “It still feels like I’m running a marathon when I’m just standing there washing my hair.” She now uses a wheelchair to help with her exhaustion and her doctor says it is unlikely that she will ever be well enough to return to work.

Morgan

She is not alone. Morgan Baker, 23, a senior at Yale University, began noticing a similar lack of energy and ability to concentrate months after she became infected with COVID-19. She says even studying causes her heart to race. In fact, according to a 2021 study, nearly 75% of people with Long COVID experience what’s called post-exertional malaise (PEM), a condition where even the smallest activities lead to utter exhaustion.

Lisa

Lisa Toran, a neurologist based out of Wenatchee, Washington has been experiencing chronic pain, facial numbness, migraines, sudden allergic reactions to common foods, and a number of other symptoms almost two years after getting COVID-19. She attempted an intravenous immunoglobulin (IVIG) treatment but stopped after experiencing months of negative side effects. Soon after, however, her Long COVID symptoms got worse and included swallowing difficulties, gastric reflux, and chronic urinary tract infections. Desperate to find relief, she gave IVIG another try.

“I was just getting sicker and sicker,” she says. “I was like ‘I’m going to die or I’m going to do IVIG.’” Toran was able to gradually work up to monthly IVIG treatments, and after 10 months, she felt well enough to go back to work. 

Anne

After getting COVID, physician Anne Bhereur of Montreal, 46, started experiencing chest pain, breathing and speaking difficulties, dizzy spells, and brain fog. Months later, she also began experiencing PEM. Eventually, an MRI showed that she had inflammation in the tissues around her heart, a condition shared by 30% of Long COVID patients.

Bhereur began taking colchicine, an anti-inflammatory drug commonly used to treat gout, which helped her breathe more easily and relieved her chest pain. She says ivabradine was also helpful in lowering her heart rate.

Mady

Mady Hornig, an associate professor of epidemiology at New York’s Columbia University Mailman School of Public Health, developed a host of medical issues, including sticky lung secretions, after contracting the virus in April 2020. She was bedridden for two weeks with nausea and diarrhea.

Two years later, those same symptoms put her in the hospital for five days. Tests showed inflammation throughout her gastrointestinal tract. She says that she’s frustrated that more clinicians aren’t collaborating with colleagues in other specialties to learn and gain a broader understanding of Long COVID’s effects, and to strategize concerning treatment and care.

“I’m trying to have more empathy for the doctors because they’re going to their medical bags and these toolkits are empty,” she says, but adds, “Why aren’t they interested in talking to one another and getting together?”

*Gale, J. (2022, November 1). These Five Women Are Helping Doctors Crack the Long COVID Mystery. Bloomberg. Retrieved from https://www.ndtv.com/world-news/five-women-are-helping-doctors-crack-the-long-covid-mystery-3485664 

Responsum Health closely vets all sources to ensure that we always provide you with high-quality, reliable information. We do not, however, endorse or recommend any specific providers, treatments, or products, and the use of a given source does not imply an endorsement of any provider, treatment, medication, or procedure discussed within.