SWAlexander
Senior Member
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The Patient-Led Research Collaborative’s Patient-Led Research Fund announced $4.8 million in biomedical research awards today, funding 9 research projects in Long COVID, ME/CFS, dysautonomia, and associated conditions.
This fund and awarded projects are distinctly meaningful for four major reasons:
First: a panel of 15 patient researchers with infection-onset illness, including Long COVID, ME/CFS, and dysautonomia, decided how the $4.8 million in research funding should be allocated and prioritized, including calling for specific areas of research. This is a change from the typical power dynamic of biomedical research, especially in chronic illness, where large organizations decide where funding should go, and patients have no input into what is studied. The panel consisted of patient researchers, most with science or medical backgrounds, with a broad range of expertise in addition to their lived experience with chronic illness.
Second: to date, Long COVID research has fallen short of its promise to improve patient health and largely disregarded insight from decades of research into infection-associated chronic illnesses. The awarded projects were chosen with an emphasis on impact and on research directions that are well informed by the existing body of research.
Third: the awarded projects themselves showcase some of the diverse topics that Long COVID and ME/CFS patients would like to see pursued. The projects span many investigative paths, including microclots, spinal-structural abnormalities, immunologic dysfunction, microbiome changes, mechanisms of sleep dysfunction, computational drug repurposing, and a clinical trial of a promising and widely available drug.
Fourth: Each project that doesn’t already have patient representatives on the project will receive 1-2 paid patient representatives from the Patient-Led Research Collaborative to inform study design. This will ensure that the lived experience of patients are incorporated in all steps of the research process.
The awarded projects are: https://patientresearchcovid19.com/press-releases/
This fund and awarded projects are distinctly meaningful for four major reasons:
First: a panel of 15 patient researchers with infection-onset illness, including Long COVID, ME/CFS, and dysautonomia, decided how the $4.8 million in research funding should be allocated and prioritized, including calling for specific areas of research. This is a change from the typical power dynamic of biomedical research, especially in chronic illness, where large organizations decide where funding should go, and patients have no input into what is studied. The panel consisted of patient researchers, most with science or medical backgrounds, with a broad range of expertise in addition to their lived experience with chronic illness.
Second: to date, Long COVID research has fallen short of its promise to improve patient health and largely disregarded insight from decades of research into infection-associated chronic illnesses. The awarded projects were chosen with an emphasis on impact and on research directions that are well informed by the existing body of research.
Third: the awarded projects themselves showcase some of the diverse topics that Long COVID and ME/CFS patients would like to see pursued. The projects span many investigative paths, including microclots, spinal-structural abnormalities, immunologic dysfunction, microbiome changes, mechanisms of sleep dysfunction, computational drug repurposing, and a clinical trial of a promising and widely available drug.
Fourth: Each project that doesn’t already have patient representatives on the project will receive 1-2 paid patient representatives from the Patient-Led Research Collaborative to inform study design. This will ensure that the lived experience of patients are incorporated in all steps of the research process.
The awarded projects are: https://patientresearchcovid19.com/press-releases/
