The people who know the most about their illness are the people who are living with it every day. You have a unique expertise that is invaluable to researchers. Biomedical research is entering a new period fueled by “patient power”. By entering data on your lived health experience, including symptoms, quality of life, and treatment outcomes, you are contributing to a data repository that will be invaluable to researchers.
To answer our most pressing questions about ME/CFS, the scientific community must do what ME/CFS patients have been asking for all along: listen. By tapping into the wealth of knowledge provided by people living with ME/CFS, we can use a big data approach to aggregate individual experiences into community-level patterns that can help researchers better understand the disease course, find and validate subgroups, initiate studies into disease mechanisms and treatments – and then quickly translate those discoveries into clinical care.
Rachael Carder, a person with ME/CFS
“Health tracking just might help individuals to understand their health at a deeper level and to make more informed decisions, and can offer us a chance to come together as a community and support each other. Now I want to zoom out and imagine the research insight that we as a community could get when researchers have a chance to work with this data.”
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