Many people who had COVID-19 have been living with disabling symptoms of Long COVID from several weeks to more than two years after recovering from the initial infection. Most are women, and many have been disbelieved and shrugged off by their doctor. In response to this crisis, Yale University researchers are aiming to get to the bottom of the mysterious condition and lend a compassionate voice to those feeling disenfranchised by the medical system.

“There are many people who have been infected with COVID who are suffering with an extraordinary set of symptoms, and yet, we’ve been unable to identify an approach which reflects their altered physiology,” study co-author Harlan Krumholz, M.D., S.M. explained in a June 2022 press release. “However, their stories and experiences can help unlock what this is, and if we work together, we can make progress towards alleviating their suffering.”*

Disbelieved and dismissed

The lingering, new, and recurring symptoms that make up Long COVID occur in about 50%-75% of patients who are hospitalized for severe COVID-19, and often develop within 2-3 months of infection in those with mild disease or who were asymptomatic. More than 200 symptoms have been documented so far. 

Long-hauler Frank Ziegler, for instance, used to be able to take long walks multiple times a week before contracting COVID-19 in January 2021. That March, after recovering from his initial infection, he lost a significant amount of weight and developed hand tremors, breathlessness, and cognitive impairment. Since then, just walking up stairs makes him short of breath. 

After being disbelieved and dismissed by his primary care provider, Ziegler learned of Krumholz through a friend who sent him a Washington Post article concerning Long COVID. He was impressed by Krumholz, who called for healthcare professionals to take the condition seriously, a rarity in the early days of the pandemic. 

The Yale LISTEN Study

After reaching out to Krumholz, Ziegler became part of the Yale LISTEN Study, a collaborative effort by Krumholz and Iwasaki that stands for Listen to Immune, Symptom, and Treatment Experiences Now. The project, funded by the Howard Hughes Medical Institute, has two aims:

• Identify Long COVID patterns by linking biological markers with outward symptoms, in order to create targeted treatments.
• Empower patients by working together with researchers to find solutions. “We want to give patients agency over the data, and enable them to make choices about the research they are a part of,” said Krumholz.

“We see you, we recognize you,” Iwasaki added, “and we are doing everything we can to try and understand how this disease is mediated.”

How to participate in LISTEN

Krumholz and Iwasaki are recruiting participants for LISTEN from the Hugo Health Kindred Community, an online community where COVID-19 patients interact, gain power over their health records, and share those records with researchers.

To be eligible for LISTEN, you must be:

• At least 18 years of age
• Live inside the continental U.S.
• Speak English or Spanish

A participant can disenroll at any time without consequence. Information on how the study works, the research team, and frequently asked questions can be found at the Yale LISTEN Study website.

To find information on study enrollment, go to the Kindred Community website.

Questions can be directed to listenstudy@yale.edu.

*Yale University. (2022, June 1). Long COVID: New study empowers patients as they struggle to find relief. EurekAlert!. https://www.eurekalert.org/news-releases/954565