Kitei: But it’s a vicious cycle. If you can’t get funding—
Lipkin: It’s not the leadership of NIH. That’s not the problem. The problem is that you need a champion in Congress who's going to go ahead and say, I want money allocated for chronic fatigue syndrome research. That’s the way it gets done. That’s the way HIV got done, that’s the way breast cancer got done, and so on. It has to be somebody who has some ability to influence the purse. And if that happens, the NIH would only be too happy to take the money and to allocate it and get the best science done. That’s all the NIH cares about.
Kitei: That’s a crazy way of doing things. If anybody should understand this disease, it’s scientists.
Lipkin: But they don’t listen to scientists. Congress doesn’t listen to scientists. They listen to people who vote for them. I was very involved in getting the autism bill passed, in the late 1990s and early 2000s. And it was two parents and a few of their friends who went down and lobbied on Capitol Hill and pushed through this first bill that created the autism Centers of Excellence. And it was the parents who did it. The problem is with chronic fatigue syndrome, and I feel bad about this, these are the most vulnerable people. They don’t have the energy or the resources that are needed to go and lobby.
Whereas if you have a child and you’re otherwise healthy, and you’re looking at this child every day, then you’re motivated, you’re strong, you’re powerful and you go down there and you complain, and push and squeak until you get the resources that you need. The other people who have the same problem are people with mental illness, and I am not saying by any means that chronic fatigue syndrome is mental illness. I’m just saying that these are also vulnerable people. Vulnerable people who do not have others looking out for them are most at risk for not getting the science that’s needed to address their problem.
But the solution for that is for the healthy ones, the people who have recovered, or relatives and friends of those who have these disorders need to push. I talk to everybody. I do everything I can to promote this. When people who are scientists tell me they don’t believe this is a real disease, I refute it, I refute it with facts, I talk to the media, but I don’t have any traction with Congress because I live in a blue state. And New York is in favor of scientific research and increasing the NIH budget. And the problem is, when you go into the South and the Midwest, you don’t have that support. The budget for the NIH has been cut dramatically.
I’m on the advisory committee for Francis Collins, and I can tell you that Francis Collins, the director of the NIH, believes that chronic fatigue syndrome is a problem. He would love to have the resources to allocate. The resources are going to have to come because people push their representatives to provide that kind of support. That's the only way it's going to happen. I’m sorry about that, because believe me, the last thing I want to do is begging for dimes and quarters for my work....
