I think getting rejected is a normal part of the process for all applicants seeking grants to study all diseases. It is heart breaking to see these researchers get rejected. I think part of the explaination lies in this Mindy Kitei interview with Dr. Lipkin:
http://www.cfscentral.com/2014/05/candid-conversation-with-dr-ian-lipkin.html#comment-form .
Here's the salient excerpt:
"Kitei: There’s no federal money for ME research. Year after year there’s no money, and more is given to male-patterned baldness than to this disease.
Lipkin: Let’s backtrack and examine how these decisions are made. First of all, the National Institutes of Health gets money from the Congress. The Congress will mandate what it is they want people to do. The Department of Defense has funding for autism, for a number of other things that people push, including, as you mentioned, some disorders that are specifically male.
One of them is prostate cancer. The Department of Defense has been running programs on prostate cancer for decades. Why? Because men in the position to make those decisions have wanted research focused on prostate cancer, so they allocate money for prostate cancer. The NIH doesn’t allocate money for specific disorders.Those kind of monies are allocated in response to congressional mandates.
Now, Tony Fauci doesn’t have the ability to start a brand-new program on chronic fatigue syndrome. This is what I want to do. He’s continually being pushed to work on influenza, HIV, bio-threat agents, things of that nature. And there is a portfolio for chronic fatigue syndrome, which, as you said, is quite small. There are not many people working in this field.
I have been in competition now twice to get funded, and the people there who reviewed me gave me abysmal scores. And the critiques of my work were unfair, and one of the people who critiqued my work said, in fact, that this is a psychosomatic illness. I was floored. I protested, and for reasons that are obscure to me this same individual wound up back on the study section, and I got a similar unfundable score. Am I upset about this? Absolutely. Do I think Tony Fauci knows about this? No. And if Tony Fauci were to find out that people said that he claimed this is a psychosomatic illness, he would deny it because he doesn’t believe that’s true. I’m sure he doesn’t believe that’s true....
[In the first set of critiques I was also told] that everybody knows that this is a herpes virus infection of peripheral blood mononuclear cells so there’s no reason to look at the gut. This is the nature of study sections. You can’t control what people are going to do when they get on…. They do the best that they can, but that doesn’t mean they’re up to the task and it doesn’t mean that they’re appropriate.
One of the challenges is that there aren’t enough people doing credible research in the field. Period. If there were more people, you’d have better study sections, better work and we’d be further along in terms of sorting out this problem.
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....
Kitei: You mentioned someone on the study section said this was a psychosomatic illness. Can’t this person be educated?
Lipkin: I think this person has to be eliminated. I pushed to have him eliminated permanently from this study section. I’m not going to tell you his name because it’s not appropriate, and I’m not supposed to know it….
Kitei: That’s one person, and it would be great to get him eliminated, but there’s a basic feeling in the government—certainly in the CDC—that this is a psychosomatic illness....
Lipkin: I don’t think that’s true."
I think that the IOM and P2P reports will be a positive influence, but that to make the most of it we need to publicly apply synergistic pressure to congress, media, and the NIH. And we need to do it now.
The #MEAction congressional petition is promising, but they need more signatures:
http://my.meaction.net/efforts/tell-congress-to-support-funding-equality-for-me-cfs/near/new .
The
@viggster and
@leokitten letters to Dr. Collins are very encouraging.
It is difficult for PWME and their caregivers to mount noisy and sustained advocacy programs, the patients are too sick, and the caregivers are busy taking care of them.
Breast cancer research advocates' progress was fueled by their grief and unencumbered by caregiving. Susan G. Komen died of breast cancer, and her grieving daughter created a very successful breast cancer research fundraising and advocacy program.
That's what we need to do, somehow...