The model presented in this video is the model that the Patient Advocate hopes can be followed in ME/CFS research. It is the public stance of the Whittemore Peterson Institute, a position that they have articulated from the very beginning. The essential bullet points involve collaborative research, shared data in real time, and patient (or treatment) oriented research. (bench to bedside to bench). These are not new ideas invented by the Whittemore Peterson Institute - as can be seen in this video. These forms of research are happening in a variety of areas - HIV, gioblastomas, MS, kidney disease - and more. The WPI is just applying them to ME/CFS research, so far with uncertain results.
Whether or not this model is realistic for the historical claptrap world of ME/CFS research will be seen in the future. Various circumstances of the last year reveal that the scientific force field in ME/CFS is more convoluted than in a disease like MS. (Is this possible?) Most of this can be related to the "disbelief factor" of ME/CFS. Perhaps with the reality that ME/CFS is crossing over (or has crossed over) into the Infectious Disease category will bring it more legitimacy. With an established disease legitimacy, more cooperation, more sharing of data (without stealing) perhaps can take place. The Whittemore Peterson Institute is certainly committed to this idea. They need our continued backing at this critical juncture. Without collaborative research, without the possibility of sharing data, any advances in ME/CFS research will take place very slowly or not at all.