From the CEO's Desk
PUTTING RESEARCH FIRST
The CFIDS Association is often referred to as a patient advocacy organization, so you may be surprised to learn that the first check the Association issued was in support of research. Since its founding in 1987, the Association has supported important research into the biological basis of CFS through direct grants to investigators, sponsorship of scientific symposia and meetings, fostering collaborations and, most recently, establishing the SolveCFS BioBank.
For the first several years of our existence, providing direct support to research was the Association’s primary activity. In an effort to meet the urgent, important and wide-ranging needs of our community, we expanded our programs. At the urging of benefactors and after other organizations closed, in 1992 the Association took on responsibility for national advocacy and press relations. In 2004, we seized opportunities to conduct health care professional education and public awareness campaigns. We sought to repeat successes achieved by much larger organizations like the National MS Society, even though our resources were sparse by comparison.
Recognizing our resources were spread too thin, our Board undertook an intensive strategic planning process to assess where the Association could make the greatest impact. The outcome? Our strategy to “stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.” We went to work immediately to implement this shift in focus, but what we didn’t do well was explain these changes to supporters and the larger community.
I take full responsibility for the confusion the inadequate communication about our strategy and focus has created within the community, and outside of it. With an expanded grants program to oversee, a new research network to foster, and the urgent opportunities created by research on XMRV and MLVs, we erred in doing the work without taking the necessary time to talk about our shift in focus. Now the lack of understanding about our organization has prompted questions and criticisms, and we find that we have fallen far behind the curve in trying to convey what the CFIDS Association of America is today. I extend sincere apologies for this breach of understanding and trust.
One message will not sufficiently convey all the ways in which the Association is streamlining its approach. This is the first step in our commitment to be much more intentional in our communications. We will use CFIDSLink, our website and soon a new blog to share news and clear, concise messages about our work. We will respond to questions that have been raised and we will do our best to address new ones as they arise. You count on us to be both open-minded and data-driven in our approach to CFS and we strive to deliver on that expectation. We will stay attuned to the vibrant, diverse, well-informed community dialogue and our actions will be guided by informed strategy and scientific promise.
The Association is intensifying efforts to build a critical mass of rigorous research that validates the biological basis for CFS and leads to improved methods for diagnosis and treatment. A few things to look forward to in the near future:
- We are forming a Scientific Advisory Board of top experts from many disciplines important to the study of CFS to advise our Board of Directors and staff on strategic research opportunities.
- We will issue a new funding opportunity for projects that build on the most promising science to advance objective diagnosis and effective treatment for CFS.
- We will expand the SolveCFS BioBank and our collaborations with other research institutions to make the BioBank an even more robust research resource.
We are transforming from a patient support and advocacy organization to one laser-focused on stimulating and supporting research. Advocacy is still a critical component of our research program, but it will be done more strategically. We will share our content expertise with policy makers and public health officials. We will partner with public, private and commercial funders to expand investment, spur innovation and apply existing knowledge to develop better diagnostics and therapies.
As this month’s issue of CFIDSLink reflects, it is an exciting time for CFS research, with sustained interest in the role of infectious agents (especially XMRV) in CFS. New technologies like mass spectroscopy are enabling discoveries like the group from University of Medicine and Dentistry of New Jersey published on Feb. 23, 2011, attracting attention from Katie Couric and “The CBS Evening News” and hundreds of media outlets worldwide. We believe the case definition for CFS must be revisited, and earlier this month, David Tuller, MPH, outlined why in the New York Times. Researchers funded by the Association have important papers at press and we look forward to continuing to share news about the discoveries that our supporters made possible.
On behalf of the Board of Directors and the staff, I express our unequivocal commitment to the mission of this organization and a future in which the life-altering disability, stigma and isolation of CFS no longer exist. We are energized by the decision to return to our research roots. There are many potentially effective approaches to conquering CFS, but with a more intensive research focus, we believe that the CFIDS Association will make a deeper impact and rapidly accelerate progress.
President & CEO
The CFIDS Association of America
March 14, 2011
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