By Amy Squires
Chairman of the Board
The CFIDS Association of America
Testimony before the DHHS Chronic Fatigue Syndrome Advisory Committee
October 3, 2012
Good morning. My name is Amy Squires. I volunteer on the Board of Directors of the CFIDS Association of America. I last testified to this committee in the spring of 2011, shortly after the NIH State of the Knowledge workshop. In my testimony, I talked about the rich lines of inquiry identified in the workshop and urged this committee to “nudge” the agencies to take a more deliberate, strategic, and coordinated approach to CFS research. I’m still waiting for evidence of that. But I thought I’d share one example of where it is being done. The CFIDS Association is taking a deliberate, strategic, and coordinated approach to CFS research. Business as usual in science doesn’t serve patients well—the incentives aren’t structured to get answers quickly to make a difference in patients’ lives. Through the Research Institute Without Walls, the Association is putting patients at the center of the work and driving deliberately towards answers that will lead to disease‐modifying treatment. To quote our CEO, “We are turning research from a game of ‘hide and seek’ to a strategic search and rescue program.” To do that, we are:
Tearing down the silos: Scientists usually meet with others in their same field of research. But CFS is a very complex, multi‐system illness, so the Association is networking researchers from many disciplines to bring their many different lenses to scrutinize CFS. In fact, one of our new 2012 research grants emerged from our 2009 grants and is a product of having brought together a systems biologist, a kinesiologist, a neurobiologist, and an anesthesiology researcher.
Tearing down the walls: Research information typically is locked up behind institutional walls until publication (if it’s ever published). That means the research system as a whole can’t benefit from that knowledge. That wastes time and money. To counter that, the Association is promoting information sharing: our research grantees share their research
on a common platform, REDCap, sponsored by Vanderbilt University.
Choosing research projects strategically: Traditional grant programs typically award based on the scientific merit of the proposal, regardless of whether it answers a pressing question in the broader system. And so many of these studies are “one and done”—the study is completed and everyone moves on, without replicating and validating the findings and without thinking about the next logical step down the path. In contrast, the Association evaluates grant proposals on scientific and then strategic merit. To illustrate, we have already seen a 700% return on investment from our 2009 grant program, through follow‐on funding provided by NIH, Department of Defense, and industry. For our new grant program, we carefully evaluated 22 proposals and in February selected five new studies that are now under way.
Building a rich resource for research through the SolveCFS BioBank: A persistent challenge to CFS research studies has been getting sufficient numbers of patients—let alone the right and same kind of patient, given the complexity of case definition and diagnosis. The SolveCFS BioBank enrolls patients and healthy controls, using objective medical history rather than case labels. It now has over 500 enrollees with about 250 more pending. One study using BioBank resources is pending publication, and four more are under way.
Building partnerships to solve CFS: the Association knows that partnerships can attract interest and new talent and resources to CFS research. For example, as a founding member of the Chronic Pain Research Alliance, the Association worked with NIH and others to shape a workshop on overlapping pain conditions, including CFS. The Association also participated in two teams that submitted proposals to the pharmaceutical company Sanofi’s Collaborate|Activate challenge, and those two proposals are among the four finalists (chosen from over one hundred) that later this month will compete for monetary and in‐kind support to implement the proposed work.
I think great things can be done to solve CFS, and I think HHS can play a role in that. But it requires new approaches. The Association wants to be a partner. Let’s move forward, aggressively and strategically. Let’s get this done. Thank you.
Note: Amy's testimony begins at about 6 minutes into this video segment. You view this on YouTube at http://www.youtube.com/watch?v=oIGpfvfFZ1w&feature=relmfu. Other segments of the meeting appear in the video listing to the right of the YouTube viewer.