I have to disagree. Collins became Director in 2009. ME was sabotaged long before that. He did not do even remotely as much as we would have liked him to do. But in 2009 when he came in, we were bogged down in the XMRV debacle. ( For those of you who missed XMRV, just be happy.) We had less than $4 million in funding, a good hunk of which went toward psychological studies. We had people in dentistry and other crazy areas evaluating research proposals.
At the end of his term, researcher funding is still too small, but it’s 4 times higher. We have 3 Cooperative Research Centers doing good work, along with a Data Center. We had a major conference at NIH a couple of years ago. The research that is funded now is all high quality research by good researchers. He assigned Dr Nath, one of his best guys, to do the intramural study which, although it was cut short by the pandemic, has started to publish its findings. He met personally with some of the participants in the study - the head of NIH doesn’t usually do something like that. He also met with representatives of ME Action and the head of NIH doesn’t do that either. There is now a special panel of experts that evaluates our research. I’m leaving out some things, I’m sure.
Did he do everything that I hoped that he would do? No. Did he do what we desperately need to have done? Not even close. He took the NIH approach, which is to move slowly, evaluate, then take a few more steps. That’s not just for us - it’s for everyone. But to blame him for things that he’s not responsible for isn’t fair. He acknowledges that this is a multisystemic biomedical illness that should be taken seriously.
I truly wish that he had implemented the great suggestions that were in the letter presented to him by ME Action. He took the NIH slow approach instead. But I don’t think that there is any question that he did more than any previous Director to move this disease forward in a sound scientific manner.
I spoke at NIH for the first time in 1992. I have watched NIH very closely since I was diagnosed in 1988. Dr. Collins could have done a lot more. We need a strategic plan, backed up by serious, set-aside funding. We need clinical trials of treatments. We need a whole lot to get out of the hole that we are in. But Dr Collins did not dig that hole. He gave us a little boost toward the surface. I hope that the next Director can do more to get us out.
