We often talk about the patient power in Long Covid, much of which comes down to the sheer numbers of those affected over the past 3 years.  It is currently thought that a minimum of 65 million people worldwide have the condition – likely a huge underestimation which doesn’t take into account those who might have singular or easily managed post-COVID symptoms (often not even diagnosed as being attributed to the virus), or those who die suddenly from acute manifestations.

Patients Led Research Collaborative (PLRC) have harnessed the power of lived experience of Long Covid to create a group of patient-researchers whose mission is to facilitate patient-led and patient-involved research into Long Covid and associated conditions.

In this week’s episode PLRC co-founders Hannah Davis and Lisa McCorkell share their experiences with us, both as Long Covid sufferers, and as advocates. 

PLRC have been gathering momentum for almost three years now.  They were the first group to publish research into Long Covid; they were instrumental in characterising Long Covid; and most recently they were invited by Nature to undertake a review of the current findings on the condition under the guidance of the eminent Dr Eric Topol along side Julia Moore Vogel from Scripps Research.

Drawn from almost 300 biomedical research papers on Long Covid, this comprehensive review sets out the major findings of Long COVID research, diagnostics and treatments.  It discusses the impact of vaccines, variants, and reinfections.  And it discusses the political and policy challenges that we face going forward.

PLRC have a $5million fund for Long Covid (and associated conditions) biomedical research studies.  Each grant is issued by a panel of patient-researchers and two patient-researchers are then attached to every project, enabling patients to truly be part of the research.