The Impact of Patient Organization on Health Care

I have been reading Steve Silberman’s excellent book Neurotribes, in which he discusses the ways families with autism organized to change the old paradigm of the “refrigerator mom,” the now-discredited idea that mothers caused autism by psychologically rejecting their babies in utero.  It seems to me that the challenges with professional acknowledgement of infestation by parasitic mites requires a similar level of patient organization.  I hope to find ways to help move that along.