ME/CFS is characterized by neurological symptoms and is frequently considered a brain disease. However, we don’t understand what changes are happening within the brain because brain tissue from people with ME/CFS haven’t been collected or studied yet. Together with ME/CFS patient associations and the Netherlands Brain Bank, the researchers will start a program brain donor program where people with ME/CFS can donate their brains for scientific researcher. Their goal is to ask at least 1,000 people with ME/CFS so that they can register up to 200 donors.
Researchers expect about 5 autopsies each year to take place. They will use the brain tissue from these autopsies to study how the brain works and what goes wrong in ME/CFS. First, they will look at a part of the brain that controls how the body reacts to stress. Second, they will study special brain cells that help with the body’s defence system. Lastly, they will check the energy suppliers of the brain (mitochondria). All of this will help research understand what changes are happening in the brain of people with ME/CFS.
Head of Amsterdam UMC Biobank, principal investigator Amsterdam UMC, guest co-principal investigator Netherlands Brain Institute
Professor, leader of the Brain Plasticity group, Swammerdam Institute of Life Sciences, University of Amsterdam
