Debi-
I would love to work from a platform with the attention-getting power of MJFF, but, unless I am missing something, there still is no provision for lay research. It is no surprise, I am sure, that I see that as a mistake.

There is an advantage to my position as such a researcher in that I am free to ask "stupid" questions, take controversial positions, cross the boundaries between disciplines, work free of the constraints of tenure or career or funding, challenge orthodoxy, etc.

I have no doubt that I make mistakes that a "real" scientist would roll his eyes at, but that reflects a misinterpretation of my self-assigned role. I am trying to be just short of outlandish because that is an important position and a "real" researcher can't do it because he lacks those freedoms.

Einstein said, "Imagination is more important than knowledge." That is what a lay researcher can offer.

Any chronic disease in this wired age has a subgroup of patients who turn to the Net and many of them become true experts on their particular disorder. What I envision, whether solo or with MJFF or Ali or whoever, is a small group of such PWP, each with his own autonomous blog, organized into a "ring" where they put their ideas on the table for their fellows to consider and comment upon. Ideally, it would prove to be a fertile and self-correcting source of ideas that "real" researchers could run with.

There are many advantages to this approach. It overcomes the problem of communication between science and patient, for example. I know that a researcher does not have time to educate me in the basics. That would make me a liability. However, if I have taken the time to tackle that learning curve on my own and then set to self-publishing my thoughts via a blog, then things shift a little.

What I hope to put together is an autonomous, self-regulating group that is by invitation only and whose members base their work on peer reviewed publications. If you have not done so, stop by my own blog to see what I have in mind on the individual level. A Matter of Balance