CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of Kim McCleary

November 2007

Scientifically Speaking

Since early spring, we’ve been looking back across the past 20+ years at how CFS first came to attention and the people and organizations that have played important roles in progress made since then. To me, one of the most interesting things about this reflective mode has been the ability to see how certain actions had much greater impact than was initially expected, even if that impact didn’t become evident for some time.

The strategic decision made earlier this year to define a scientific director position, raise funds to support this position and then to hire someone of Dr. Suzanne Vernon’s caliber (see Association Hires Scientific Director) is, to me, one of those actions that will be seen to have had an enormous impact when we look back many years from now. While I believe the addition of Dr. Vernon to our staff will bring immediate tangible benefits, I expect the real gains will be realized over a longer period of time. Allow me to share a few reasons why I feel this way.

In 1987 when the Association funded its first research grant, the process of evaluating proposals and selecting grantees was fairly straightforward. Few researchers were interested in CFS, and studies focused on a relatively narrow set of disciplines. Fortunately, over the past 20 years the field has grown and the variety of disciplines involved has expanded. While this growth and diversification has been a longtime Association goal, grantmaking has become increasingly complex as we’ve been challenged to recruit knowledgeable reviewers, interpret progress reports and help investigators establish collaborations and overcome unexpected difficulties. Standards in the administration of research studies have also tightened, yielding more intense scrutiny by funders, universities and the institution review boards that regulate human subjects policies and other ethical issues. We’ve had to respond to these changes, too.

Dr. Vernon’s training as a microbiologist, her experience managing projects and contracts at the Centers for Disease Control and Prevention, and her wide array of contacts spanning many different scientific and medical disciplines will all be assets in the management of our grants program. She will certainly have an immediate impact as we retool our policies, revisit our funding priorities, issue a call for research proposals, peer-review submissions, make funding decisions and closely monitor progress according to predetermined benchmarks.

Of longer-term benefit will be her ability to communicate with scientists about their work and relevant studies being done by others, to “connect the dots” in seemingly disparate fields of research. Until now, this was largely a function of the biennial research conferences sponsored by the International Association for CFS/ME. But two years is a long time to wait between dialogues. A full-time scientific director who dedicates time year-round to organizing research roundtable meetings and symposia, making site visits to funded investigators and delivering presentations at scientific sessions will help speed progress and cultivate a larger cadre of researchers who think about CFS and apply their talents to its study. Dr. Vernon has proven her ability to do this by arranging numerous important collaborations, as well as organizing the successful series of CDC-sponsored meetings held at the prestigious Banbury Center at Cold Spring Harbor Laboratory that culminated in April 2006 with the publication of 14 papers in Pharmacogenomics, authored by teams of researchers representing medicine, microbiology, immunology, virology, mathematics, physics, computer science and several other fields.

Dr. Vernon will also help translate the work going on in research labs and clinical research sites to CFS patients, family members and health care professionals. She demonstrated this skill most recently at the Association’s Education and Empowerment Seminar in Denver in October 2007, where she firmly held the attention of 125 participants and then spoke to a few dozen people individually after the program ended. Her grasp of the science is matched by a passion for helping people understand the discoveries that will lead to biological markers, better means of diagnosis and more effective treatments. Just a week before that meeting, she had spoken before a standing-room-only session at the Infectious Disease Society of America, helping specialists understand CFS and what kind of care they could be offering their patients who fit criteria for this condition.

Dr. Vernon will also be called upon as a spokesperson for the media and in policy venues. Similarly, congressional staff or agency representatives respond favorably to having a scientist explain—in plain language—how research supports a request for a particular action. Dr. Vernon is comfortable in both arenas, having given interviews for publications as diverse as Science, Nature, the Smithsonian and O (Oprah’s magazine), and having spent 17 years at a large federal agency where congressional action determined overall funding levels and other forms of politics shaped programmatic budgets.

My 17 years as the CFIDS Association’s chief staff executive give me the confidence to predict that strengthening our staff, our organization and the field of CFS research through the addition of Dr. Suzanne Vernon as scientific director will be one of those turning points we identify as a major contributor to progress when we look back years from now. I invite you to join me in welcoming her to this new post.

Kim McCleary
President & CEO
The CFIDS Association of America