Founder of Health Rising and Phoenix Rising
Having patients be involved at every step of research is a great idea for "mysterious" diseases like ME/CFS and FM.
Just returned from the PCORI (Patient-Centered Outcomes Research Institute) conference in Minneapolis, Minnesota. Met a great group of researchers, patient advocates, and industry partners. If you aren't familiar with it, PCORI is a new, federally-funded initiative to increase the speed at which research can positively impact patients.
An important aspect of PCORI projects is that individual patients are involved in every step of the research, including helping to decide what treatments are tested, what questions are asked, and how the studies are conducted. It is an interesting approach to science that helps ensure that researchers are working on the problems that are most important to individuals with medical conditions.
PCORI is currently supporting several large projects, which you can see by clicking on the "Research & Results" tab on the webpage . . .