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: 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….
but do we know the total reach of these people:
