However I still believe that the low application rate at the NIH is a catch-22 - low applications because most researchers expect to be turned down, hence don't bother.
Ron Davis mentioned this in yesterday's Christmas address, that one of the reasons OMF and the Stanford center are having trouble is because they are not experts in the field they are making research proposals for. Which I guess means no one is since it's entirely new territory, building new technologies and relying on new areas of science. Without funding you can't train experts, and without experts you can't get funding. Goody.
So we are kind of back to the fact that the field of ME is still in observation and hypothesis-making phase, which is explicitly not funded by most medical institutions, they expect things to be further along before they do that. But in nearly every other disease, there are labs, research institutes and entire departments that are fully-funded to do this kind of work outside of specific grants. This has nothing to do with the NIH, this funding has to come from universities and medical departments, who refuse to spend a single dollar on what they perceive is a waste of time.
This isn't something we can do by ourselves, no amount of funds raised will lead to many leading medical schools take on the normal responsibilities they have been rejecting for decades. Neither can the NIH or CDC. The universities are waiting for the research to knock, fully-solved, at their doorstep before they begin, and meanwhile their choosing to ignore us entirely means the first steps cannot be done at the scale that is needed.
I have no idea how we resolve this catch-22. Davis, and Tompkins I think, has been spending a lot of effort talking at those institutions, but no matter how well-respected he may be, there are decades of inertia behind the dismissal of this disease so it's just not enough yet to push us over the threshold.
Medicine simply doesn't have a way to deal with a disease so maligned that nothing can get off the ground without fully solving the entire problem, doesn't know how to handle the reality of there being more people invested in sabotaging efforts than in solving the problem. There aren't supposed to be such a thing as "enemies" of an entire disease. And yet here we are.