From The Desk of Kim McCleary

The CFIDS Association of America was founded in 1987 by a small group of individuals intent on fighting back against the disease that had stolen so much of their lives. The first dollar spent by the organization was directed to medical research. Since that time, The CFIDS Association has funded over $4 million in research, making our organization the largest source of CFIDS research money aside from the federal government. In the past two years, the Association has funded nine studies totaling nearly $450,000 in research support. Visit  http://www.cfids.org/cfidslink/research-grants.asp for a list of the investigators, institutions and project titles.

Over the years the purpose of our research program has evolved. In the early days, there were very few pioneering doctors and researchers studying CFIDS . Decisions about which studies to fund were rather simple, because the field was so small. Hopes and dollars were invested in projects that promised to uncover the cause and the cure. Needless to say, these efforts fell short of delivering either one.

As our organization has grown, decisions about which projects to fund have been made with greater care. Not only are there more people researching CFIDS, but the shift from narrowly focused single-agent hunting expeditions to multidisciplinary studies of numerous out-of-kilter body systems makes the granting process more complex. We’ve modeled our program on those of other health charities funding research, blending peer review systems with patient-based needs and concerns.

In the late 1990s we found the caliber of submitted proposals was falling. In 1999, we received just four applications, only one of which was deemed worth supporting. So we temporarily switched gears and held three important research symposia to establish a roadmap for the most promising research directions and generate interest in CFIDS among respected investigators working in related fields. The recommendations from each symposium were published in three separate issues of the peer-reviewed journal NeuroImmunoModulation. And when we reopened our research program in late 2001, a record 37 letters of intent flooded in.

Now letters of intent are reviewed by a panel made up of CFIDS researchers and clinicians, research methodology experts and patient advocates. The panel makes recommendations to the Executive Committee of our Board of Directors, responsible for selecting which investigators are invited to submit full applications for more thorough evaluation. A Scientific Advisory Committee (SAC), comprised of CFIDS-savvy reviewers, is assembled for the final review; members are recruited depending on the specific expertise required to assess the highly detailed proposals. Final funding decisions rest with the Executive Committee, after considering the SAC’s recommendations.

Why such scrutiny? Here are three of the top reasons:

• Funds are limited, making each dollar more precious. Consider your own personal finances. Living on a tight budget means thinking about every cent before it’s spent. The same is true for our research.
• Nothing is gained from poorly designed studies. Good intentions and good ideas are worthless if not thoughtfully translated into careful methodology, data collection and analysis.
• Successful pilot studies should be able to compete well for big research dollars. The Association’s goal is to shift the funding burden from the patient community to federal sources and the biotech industry. Discovering a biomarker, developing a diagnostic test and finding effective treatments require enormous sums of money. Those personally affected by the illness are the least capable of financing research on this scale.

This spring, we received 24 letters of intent. The Executive Committee has invited 10 researchers to submit full proposals. At the conclusion of our exhaustive review process we will announce new awards. Our commitment to research – the program that launched The CFIDS Association 17 years ago – remains strong. Your support will enable us to fund legitimizing science and speed progress toward better diagnostics and treatment.

Respectfully yours,
K. Kimberly (Kenney) McCleary
President & CEO
The CFIDS Association of America