From what I've read, each of the following ME/CFS researchers became involved as a direct consequence of personal experience. Maybe the list is incomplete? Martin Lerner - Contracted ME/CFS himself Leonard Jason - Contracted it himself Fred Friedberg - Contracted it himself Byron Hyde - His daughter contracted it Lucinda Bateman - Her sister contracted what appeared to be ME/CFS (was it?) John Chia - His son contracted it (aged 14) Kenneth Friedman - His daughter contracted it (aged 17) It's perhaps not coincidental that this list includes some of the most important and the most outspoken of ME/CFS researchers. I suspect that for most diseases, the proportion of researchers motivated by personal experience would be far lower.