Discovery Forum 2017 (SMCI): Presentation by Dr. Ian Lipkin

[Ember]

Some quotations:

At that point, we gathered together a group of stellar clinicians and scientists to examine the evidence, to find ways that we could collect the best specimens and so forth. And many clinicians are here in this room who participated in that: Sue Levine, Dan Peterson, Cindy Bateman, Nancy Klimas and Jose Montoya, who isn’t here. And we found no evidence whatsoever of XMRV (9:00 – 9:35).

That particular corpus of people who built that study ultimately joined what was known as the Chronic Fatigue Initiative that was sponsored by the Hutchinson Family Foundation where we began to tackle all sorts of interesting problems with the samples that had been gathered and had accumulated, looking at the microbiome, beginning metabolomic research, integrating cytokines and metabolomic work and so forth. And there’s a lot of very exciting work from that particular team that will be coming out shortly.

I was very encouraged thinking that life had changed for ME/CFS research, and I began to submit with this group a series of applications to get support from Study Sections at NIH to do the research that we knew needed to be done. The first report that came back from Study Section told me that ME/CFS (first of all, they said CFS) is a psychological illness, and this is a waste of resources. The resubmission which, partly in response to that, but it’s very difficult to tackle that, told me everyone with CFS had Epstein-Barr virus infection. So clearly this wasn’t going to go anywhere. The third time however we put in our application, we got some support.

So it’s good we have a baseball metaphor, right: you’ve got three at bats before they throw you out. And now, with three ME/CFS centres, we really are postioned to score (10:00 – 11:30).

You should know that key members of Congress love earmarks. And it’s important to be a squeaky wheel. But not all wheels, you know, are created equally. You have to know how and when to squeak. And those of us who have some experience in this aspect of government can be helpful, I think, in guiding some of that work. The NIH is facing unprecedented resource constraints, and these are becoming increasingly tight. There’s an effort to seek public/private partnerships, as well as inter-agency partnerships: Department of Defense, USAID, as well as NIH and CDC. And this is an area where an agency like Solve ME/CFS could be a very important spokesperson and a very important coordinator group in building the same sorts of resilience that we see in funding for MS, Parkinson’s disease, autism and hopefully...certainly ME/CFS (12:45 - 13:50).

I’ll close by answering two questions that I’m getting most frequently from patients and jounalists as we begin to recognize these centres and what it means. The first is: am I happy with the outcome of the RFA that was issued by Joe and Vicky and others? And the answer is: to some extent. Like Bill and Melissa Gates, I’m an impatient optimist. I think that, you know, that this is, we should think of the glass as being more than half full. On the other hand, there was a lot of good science that was left on the table. We should have funded more centres, and the budget should have been larger.

And the second is: can we do something substantive with the resources that we have?And here I’m going to quote Cesar Chavez: "¡Si se puede!" For those of you who don’t know Spanish, it means, “Yes, we can” (15:35 – 16:50).