From The Desk of Kim
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
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
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
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
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
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
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
Association 17 years ago – remains strong. Your support will enable us to fund
legitimizing science and speed progress toward better diagnostics and treatment.
K. Kimberly (Kenney)
President & CEO