Suzanne Vernon, PhD's Acceptance Speech for the IACFS/ME Award for Research Excellence

Dr. Cindy Bateman: "The first time I heard Suzanne Vernon's name is when I read all 14 of the papers published in a special issue of Pharmacogenomics that Suzanne facilitated through the CFS Computational Challenge while she was at CDC. Since then, I have come to know her as a passionate organizer, networker and creative thinker who has made it her mission to advance the field. In 2007, when she joined the CFIDS Association of America as Scientific Director, she has been the catalyst for the CFIDS Association to raise $1 million to stimulate and oversee CFS biomarker research."

Dr. Suzanne Vernon: "I would like to thank the IACFS/ME for this award recognizing my contribution to research. I never get nervous, but my heart is pounding tonight. I’ve had the good fortune of working at a place I dreamed of since I was young, a place where I could do the kind of research that could make a difference in people’s lives. I am speaking about the Centers for Disease Control and Prevention, where I worked for 17 years. I’d like to acknowledge my amazing colleagues from CDC, a team I helped build, who are here tonight for the work we did together.

You might be wondering why I would leave my dream job to work for the small, non-profit we know as the CFIDS Association. I thought the time was right for translating the research that our CDC team was doing in conjunction with the remarkable science going on throughout the world to the patient community, the biomedical community and our policy makers. The past 16 months as scientific director of the CFIDS Association have been very rewarding. I work with remarkably dedicated people including Kim McCleary. Every organization and patient community should wish for a person as intelligent, committed and tireless as Kim. I’ve met many people living with CFS and I’ve had the honor of translating science ‘geek speak’ into information they can understand. As rewarding as this experience is – as with this award – it is bittersweet. I haven’t had as much to translate as I had hoped. While the CFS community appreciates and supports research, they still need providers to care for them, they long for objective diagnosis to validate this illness and they require improved treatment to help regain the life that CFS has taken from them.

20 years of CFS, $187 million of federal funds spent on CFS, 5,000 PubMed papers and what does research have to show to the patient community? We can tell them that CFS is a complex illness that alters the function of many body systems. We can tell them that they are not alone with as many as 4 million people suffering from CFS just like they do. We can tell them the CFS costs our economy billions each year. But we cannot tell them what causes CFS or that there is a way to objectively diagnosis it or that it can be treated. Ironically, we say that the earlier CFS is diagnosed the more effectively the illness can be managed and the more likely one is to recover. In the meantime, there is no early detection, no objective diagnosis and without effective treatment. We have a huge public health crisis that we’ve barely made a dent in.

There is hope. With the financial support of one generous donor the CFIDS Association partnered with Drs. Lucinda Bateman, Chuck Lapp and Medscape and over the past 6 months Medscape has issued 17,000 continuing education certificates to health care providers across the U.S. Public awareness of CFS is high with surveys indicating that a majority of providers indicating they understand CFS is a real and debilitating disorder. On the research front, NIH currently funds 25 scientists conducting CFS research and is working with the CFIDS Association and our 6 funded investigators to establish and expand a CFS research network. This will allow for standardization of methods and sharing of information – ultimately accelerating the pace that research will meaningfully impacts patients’ lives. CFS is a public health crisis but it will not get the respect and research dollars the CFS community deserves until we – the research community – learn how to put egos aside and work together to generate the kind of evidence-based research that is required in order to have policy makers understand the magnitude of the problem at hand. Solving CFS is not just about publishing papers – it is about learning, communicating and sharing information and experiences with each other in order to make progress at an accelerated rate.

CFS is complex and challenging -- just the kind of problem that scientists love to tackle. And we are fortunate because we are a multidisciplinary biomedical research community with ID docs, molecular biologists, neurologists, psychologists, internists, mathematicians, and the list goes on. I challenge you to name other disease organizations represented by the intelligence, talent and diversity present in this organization. I will close – at risk of repeating myself – by saying that we can solve CFS and we can serve as a model scientific and medical community if we coalesce and tackle the public health crisis together, by learning, communicating and sharing information and experiences with each other in order to solve CFS."

Suzanne D. Vernon, PhD
March 14, 2009
International Association for CFS/ME Research & Clinical Conference Awards Banquet
Reno, Nevada

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