Looking Back, Looking Ahead

By Suzanne D. Vernon, PhD, Scientific Director

November 1, 2009, marked my two-year anniversary as scientific director for the Solve ME/CFS Initiative . Of the twelve years I have been working to solve CFS, these past two have been the most challenging, exciting, and rewarding of my professional career. Challenging because we have strategically realigned ourselves to be the largest CFS advocacy and research support organization in the U.S. Exciting because we have funded investigators who are researching and discovering markers that will increase the likelihood of early detection, provide means for objective diagnosis, and refine approaches to treatment. Rewarding because we lead advocacy and research support efforts with integrity, innovation, and purpose. I intend to continue my dedication and commitment to make CFS widely understood, diagnosable, curable, and preventable by working with the Association for as long as it takes to achieve our mission.

I am also humbled. Because of your support we have been able to fund more than $5 million of research looking for viral and bacterial causes of CFS, studying CFS immune dysfunction and RNase L abnormalities, and dysautonomia – to name a few of the many topics we’ve supported over the years. These studies have been spearheaded by top-notch scientists, many who are now known as leading CFS investigators in the world including: Drs. Anthony Komaroff, Daniel Peterson, and Nancy Klimas. In the late 1980s when retroviruses were prime suspects for CFS, the Solve ME/CFS Initiative provided more than $400,000 in support to Dr. Elaine DeFrietas to study an HTLV-II like retrovirus. This was the first sighting of a retrovirus in people with CFS. The Solve ME/CFS Initiative has always understood the power of research, but it is you – our fervent supporters – who have entrusted us with making this research possible. It is you who are to be congratulated for investing wisely. You have helped us create a strong foundation of research and researchers and now, in light of the XMRV discovery, we are perfectly poised to expand our support of research.

Many readers may not realize the incredibly competitive and political nature of science. To most of the CFS medical and research community, the XMRV finding published in Science was a surprise announcement. While many investigators were cautiously optimistic and excited about how this could be a game-changing finding, some were ready to “pack up and go home” – mostly because the media blitz read like a “case closed” Sherlock Holmes novel. It takes only a brief review of lessons learned from other remarkable discoveries like HIV to understand that detecting a virus is the beginning. If the XMRV finding is replicated in other CFS populations, validated to be the cause of CFS, and the FDA reviews the quality of XMRV diagnostic tests, then we can “check off” objective diagnosis from our to do list! XMRV is a new beginning, not the end.

Personally, I hope XMRV is validated and found to be the cause of CFS – finally we will have a context for all the important and remarkable ongoing research. And in no way does XMRV reduce the importance of ongoing research on immune dysfunction, other pathogens, post-infection fatigue, dysautonomia, HPA axis dysfunction, oxidative stress and altered neurometabolism, etc. On the contrary, it gives these investigators a strategic advantage and a competitive edge for CFS funding opportunities that will advance treatment and prevention.

The next two years promise to be more challenging, exciting and rewarding than the past two – not just for me, but for all of us. Thank you for your continued support, investment and trust.

Suzanne Vernon, PhD, is the Association’s scientific director. She has nearly two decades of experience as a microbiologist.

November 1, 2009