I posted this on the White House Chronicles (under Media) thread, re funding research, but it might be relevant here.
"It was very revealing, as Dr Plotz (from the NIH) points out (during the television interview), that allocation of NIH money for research is led by the number of scientists interested in an illness or pathogen, or the degree of scientific interest generated by particular avenue of research which encourages researcher groups to apply for grants - not the number of desparate patients in need, or the degree of devastation caused by an illness, or the numbers of dead and disabled, or the economic or social, implications of not treating it and ... etc .
In other words, if an illness catches the interest of a scientist group because it is 'fascinating' or 'cool' to study, or 'scientifically sexy', or perhaps because there is a chance for academic prestige or a Nobel - then it stands a chance of getting studied and funded, because more scientists will send in applications for grants.
In other words, no one is serving the interests of patients or the public here.
Well I guess it was obvious really - but it just shows how back to front the system is. Made me furious actually and muttering expletives under my breath which are totally unprintable ... "
ie. I guess we have been pitching to the wrong people all along, or perhaps not in the most effective direction.
Perhaps we need to be politely pitching directly to scientists, academics and Universities with biomedical research facilities, to get directly interested in this field - they will then pitch the Government and federal bodies for allocations of funding and grants for their proposals. (Witness Dr Coffin's comment/request for XMRV specific grants at the 1st XMRV Conference last month, to maintain the research impetus in XMRV).
This all starts with the individual scientists, not the Government or the NIH.