akrasia
Senior Member
- Messages
- 215
@Amaya2014 , I think there should be such a liaison at the NIH.
And I will go you one further: I believe there should be at least one ME/CFS patient advocate appointed to participate in a monitoring role. This advocate - and there can be more than one - should have a say in approving each and every patient candidate for study enrollment. They should be part of the entire study process as it unfurls. If necessary, they can be replaced by other advocates as health and time dictates.
ME/CFS patients not only have an undeniable role as study participants, they bring a virtually unparalleled depth of insight into the disease and its many implications. They would prove invaluable as study consultants.
Excellent idea, only I wouldn't confine consultants to patients. I would include someone like Ken Friedman, for example.