Not long after becoming ill, Amy Siniscalchi started experiencing intense burning sensations in her limbs. The burning morphed into electrical buzzing, and at times, she felt like her blood was gurgling like seltzer in her veins. Siniscalchi, like many others, was exposed to COVID in March 2020, and despite being a healthy forty-four-year-old, she never fully recovered. She suffered from debilitating fatigue, memory problems, trouble walking, and the gurgling sensation in her veins.
Seeking help from her primary-care doctor, Siniscalchi felt dismissed and turned to online forums where she found others like her experiencing similar symptoms. She became a part of a patient-led research collaborative that ultimately led to the first systematic study of patients with Long COVID. In 2022, she joined the LISTEN study, a clinical-research effort at Yale, under the direction of cardiologist Harlan Krumholz and immunologist Akiko Iwasaki.
The LISTEN study is an attempt to understand Long COVID and similar conditions, with input from participants. The study’s extensive surveys were created with patient input, and participants are invited to freewrite about their illness experiences. One of the study’s objectives is to create a taxonomy of chronic-illness presentations following likely COVID infection, which involves sorting out how patients with different symptoms cluster along multiple axes. The team also collects blood and saliva samples to analyze immune signatures that correlate with various illness presentations.
In efforts to meet the needs of Long COVID patients, the LISTEN model is democratic and invites participants to have a say in the research process. However, there has been tension between patients and scientists regarding the classification of Long COVID, but Krumholz and Iwasaki’s approach is to honor everyone’s experience, regardless of controversy.
As the study continues, it aims to bridge the gap between patients and scientists and provide a better understanding of Long COVID.