Make Visible: Understanding Complex Illness

The Patient-Led Research Collaborative (PLRC) are a group of patient researchers who aim to facilitate patient-led research into infection-associated chronic conditions.  Since their inception they have published numerous papers and articles including a complete review of the Long Covid findings in January 2023 in Nature, an article on designing clinical trials in Life Sciences and on the impacts on female reproductive health in Frontiers.  They have worked with the CDC, the NIH, the WHO, and collaborated with Yale, Imperial and UCL. In this week’s interview with PLRC’s Hannah Davis and Lisa McCorkell we discuss their organisation’s achievements - the progress and impact of patient-led advocacy and research in Long Covid and related conditions.  We discuss some of the many studies that they have funded including the patient-generated hypotheses journal that they launched in May 2023, and the Long Covid Moonshot project: Long Covid Research Moonshot Act of 2024, which aims for $1 billion annual funding for research and treatment for the next 10 years, is a bill that has now been proposed to the U.S. government by Senator Bernie Sanders. “The legislation that we have introduced finally recognizes that long Covid is a public health emergency and provides an historic investment into research, development, and education,” Sanders said. PLRC have been instrumental in the introduction of this legislation within the U.S. and, as they continue to try and change patient outcomes for the better globally, we discuss their international collaborations and what is still needed: better-informed public policy and medical education.

Introducing Make Visible, the podcast shining a light on complex chronic illness. Join us every two weeks as journalist Emily Kate Stephens uses her experience of living with an energy limiting condition to bring us the latest research and insights from the world’s leading experts, scientists and healthcare professionals.  Including ME/CFS, Long Covid, EDS, Fibromyalgia, POTS, and more, we delve into the science of invisible illness. makevisible.com