COVID source shout-out: Patient-Led Research Collaborative

In this final newsletter, I wanted to highlight one of my favorite sources for new research on COVID-19 and Long COVID (and one that published a new paper recently): the Patient-Led Research Collaborative (PLRC). PLRC is an independent research group including people with Long COVID and related chronic diseases, such as ME/CFS and POTS, who also have scientific research experience.

This organization has been a leader in Long COVID research since May 2020, when it published a study describing persistent symptoms among people who got COVID-19 earlier that spring. The group’s further papers have included comprehensive analyses of Long COVID symptoms and reviews of other research. In addition to running studies, the organization funds biomedical research, publishes patient-generated hypotheses for scientists, and advocates for better patient engagement in Long COVID research.

PLRC has regularly pushed the Long COVID field forward, with papers addressing under-studied topics like reproductive health and mental health. Their latest paper similarly provides data about working with Long COVID, an issue that is under-studied yet frequently discussed in the Long COVID community. The paper summarizes results from a survey of about 500 people with Long COVID describing the condition’s impact on their work.

From the survey results, the researchers found four primary themes: 1) people with Long COVID want to return to work, motivated by financial pressures and a sense of purpose for their jobs; 2) diverse, complex, and sometimes inconsistent Long COVID symptoms can interfere with work and other day-to-day tasks; 3) people face disbelief and stigma due to Long COVID; and 4) support from medical providers is important for returning to work. These findings align with stories I’ve heard from people with Long COVID whom I’ve interviewed for stories, as well as conversations I’ve read online.

If you’re looking to keep up with impactful Long COVID research, PLRC—along with the organization’s collaborators and projects it has funded—is an important group to follow.

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