From the CEO's Desk

June 2011

Spring is always a busy time, but the past few weeks have been especially so. On May 24 we launched our new website and blog at Research1st.com. We have welcomed 5,914 visitors so far, hosted 13,644 page views and moderated a growing dialogue about a variety of important research topics. Of course, XMRV continues to be top of mind. Last week’s set of publications in Science magazine attracted attention from international media outlets and has spurred intense debate about whether research into the link between XMRV and CFS should continue or end. In a brief summary of the latest studies, the Association affirmed its earlier position that,

“The CFIDS Association stands for rigorous research that leads to better care for CFS patients. The results of NIH-supported research into XMRV will provide answers about whether XMRV is a route to better care. We will support the outcome of those studies, whichever way they lead. We will continue to foster the engagement of scientists interested in viral hypotheses and other well-reasoned approaches to improving diagnosis and treatment.”

This statement has been reflected in some of the media coverage, including reports from National Public Radio, U.S. News & World Report and other outlets. These articles in Scientific American and Nature help put the issue in perspective.

CFS is a complex condition and research into other promising areas must continue, regardless of the outcome of further studies on XMRV. We are delighted to share news from Kathleen Light, PhD’s team at the University of Utah that just published its latest data that holds very strong potential for a blood biomarker for CFS and post-exertional relapse. They have found a combination of four genes expressed after a moderate exercise challenge that meets criteria for a “very good to excellent” diagnostic biomarker. They have also identified two subgroups of CFS patients based on the activity of one gene, alpha-2A, which is important to the regulation of sensory nerve signals and norepinepherine release. In one group of CFS patients, alpha-2A was elevated and in the other it decreased following the moderate exercise task. The ability to subgroup on this measure could help guide treatment more effectively.

This study, published in the Journal of Internal Medicine, was funded by the CFIDS Association of America in its last round of grants. I have written a detailed summary of the study at Research1st and hope you will find this news as hopeful as we do. The Lights are committed to seeing this work through to the next stage of development and have additional publications at press, as our summary indicates.

We have other success stories to share about our most recent round of grantees who are all at work analyzing data, writing manuscripts to report their findings and applying for new grants to build on what they have learned. One of our grantees, Gordon Broderick, PhD, of the University of Alberta, has secured a total of $4.5 million in new funding from the National Institutes of Health and Department of Defense as a result of support from the Association for his work on cytokine networks. He was also one of the “stars” of the NIH ME/CFS State of the Knowledge Workshop held April 7-8, 2011.

We look forward to sharing more news about past grantees, as well as news about the next phase of our research program. June 3 was the deadline for investigators to submit Letters of Intent to our Request for Applications seeking proposals that advance diagnosis and treatment. We will provide an update on the number of letters received and general information about the letters submitted.

Finally, as promised in my March 10 letter, we have formed a Scientific Advisory Board to help guide and shape the Association’s research program as we continue our transition to a research-focused organization. Please take a moment to read the bios of the prestigious group of experts that has agreed to serve the Association in this capacity. We have had one meeting by telephone and will convene in person at the Banbury Center of Cold Spring Harbor Laboratory in September together with our Board of Directors.

In spite of the controversies that create headlines, there are many exciting research projects making incredibly important insights. With our narrowed focus, we are better positioned to leverage the advances being made. We hope we can count on your continued support of rigorous research that leads to better care for people with CFS.

With thanks,

Kim McCleary
President & CEO
The CFIDS Association of America
June 9, 2011

____________________________________________________________________________

CFIDSLink is offered free-of-charge to anyone who requests it. Please help us continue being able to provide this service. Donate now.