Association Expands Its Research Program
By Kristina Hopkins, CFIDS Association CFO

Research. It’s the key to so many goals embraced by the CFS community. A diagnostic marker. More effective treatments. Enhanced credibility. A cure.

In 1987, the Association made its very first expenditure—a $15,000 research grant to Dr. Paul Cheney. Since then, the program has grown to be the largest source of support for CFS studies outside of the federal government, with total grants made of $4.8 million. It has evolved over time, to seize new opportunities in the field of CFS research, reflect the changing research environment, leverage past successes and avoid repeating missteps.

At every stage, we have worked to be a potent catalyst for the field, stimulating progress through the exchange of ideas and data as well as by providing direct financial support. The strategy, always, is to determine where and how the resources we invest can lead to advances in CFS research, bringing science closer to the answers we need.

Presently, the focus is on supporting pilot studies so investigators can test novel hypotheses, collect data and refine study design to attract larger sums from major funding sources like the National Institutes of Health (NIH) and biotech companies. We’ve got sucesses to show. Just this September Dr. Brigitte Huber secured an NIH grant with pilot data from two years of Association-funded research. But the pace of the progress we can make on this scale is just too slow, and the crucial mission to conquer CFS dictates that we augment our role.

Over the past year we have looked closely at our grantmaking policies and priorities and surveyed successful grant programs developed by other organizations, including the Michael J. Fox Foundation, Cure Autism Now, LAM Treatment Alliance and the Juvenile Diabetes Foundation. We identified gaps in our approach and a variety of strategies to fill them. The ideas came easily. What we lacked was an individual with the time, expertise and budget to implement them.

With guidance from several outside experts, we developed a detailed position description for a full-time, doctorate-level Scientific Director. We also began talking with supporters about the funding needed to attract such an individual and the additional funds he or she would need to fuel an expanded research program. We established an interim, but ambitious goal and agreed to begin our search when we hit the halfway mark. Fortunately, this plan excited several benefactors and, this summer, our “help wanted” ad circulated through several professional organizations. We will make a campaign goal and hiring announcement before year end.

So what exactly will the Scientific Director do, once hired? It has actually been challenging to narrow the scope of the position to what one capable person could reasonably be expected to achieve. The mission statement for this position is “to translate scientific ideas into concrete action by research groups within federal agencies, academic institutions and non-governmental organizations through policy development, educational outreach and direct funding support.”

The Scientific Director’s five top priorities will be to:

• Lead the Association’s research grants program, developing funding priorities and accountability measures to expedite progress in the search for biomarkers, treatments and a cure.
• Organize opportunities for scientists to share ideas and information, advancing the field of knowledge;
• Build strong collaborations with CFS researchers in the U.S. and other countries, documenting the breadth and depth of studies to identify synergies, gaps and opportunities that warrant higher priority.
• Serve as a CFS subject matter expert in scientific, policy, media, and development settings and at conferences for health care professionals and patients.
• Survey other fields of research for findings and scientific approaches of potential relevance to CFS.

There are several other key responsibilities, but this set of tasks will provide the launch pad for much more proactive engagement in research than the Association has traditionally been able to achieve. The Board of Directors will retain its role in establishing research policy and approving funding for grants submitted, based on the recommendations of a scientific peer review committee.

To date we’ve raised $303,000 so far—to rapidly expand the scope of our research efforts over the next three years. The challenge of getting this enhanced program off the ground will be matched only by the force required to sustain it, and we will need to rely on the generous community that has supported the first two decades of Association-funded research until other funding sources supplement individual gifts. In truth, even the nearly $5 million funded so far is a fraction of what will be needed to make meaningful progress in diagnostics, treatments and a cure. By way of comparison, the Michael J. Fox Foundation has funded more than $95 million in Parkinson’s research grants since its founding in 2000. But the CFIDS Association of America is committed to shouldering a greater share of the responsibility for progress in CFS research, and a staff Scientific Director is one element we found to be consistent among those funding programs we hope to emulate.

Advances in understanding and technology make this the opportune time to launch this initiative. But this position will further strengthen our advocacy and media activities, as well, by enhancing the credibility of the field, the Association and the illness with a wide range of audiences. Sending our own scientific spokesperson to Capitol Hill or to interviews with national news outlets will give added “heft” to our messages, added attention to CFS science.

We look forward to announcing our new Scientific Director and the research campaign goal in the coming weeks and to sharing news of other progress in expanding our research program. Stay tuned!

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Research matters. Through donations from individuals like you, the CFIDS Association of America has become the largest source of CFS research money aside from the federal government. 

If accelerating the pace of CFS research matters to you, donate now.