I agree, in part, but would like to see more of them joining together, providing samples, as some of them did for the Lipkin study, for example. There seems little doubt now that those more familiar with our condition will be the ones to carry out the research - will less funding coming from Govt. sources: but they MUST by joining together do these studies on significant numbers of patients. I really can't put into words how much I loathe seeing small studies be produced that appear 'interesting' and then never get replicated. I think our condition has had more than enough of these 'pilots' and it's time to really begin replication and/or large powered studies that will negate spurious hypotheses from the past that have been borne on such pilots, or will move the science forward recognisably. There is also something to be said I think for being a little cautious in believing a study 'good' because a known 'expert' is behind it. I would like more openness with respect to protocols, and peer-review, as part of or prior to any public effort to raise funds. But when push comes to shove, I would rather see researchers doing it privately, than not doing it at all. And times have definitely changed - we can't rely (not that we could) on Govt. funding for science - and in that I don't think we are much different than in other illnesses - though the $ spent are of course proportionately less.