The CFIDS Association was founded in 1987 and our first dollar was invested in research. Over the first 20 years of service to the community, donors helped us fund $4.6 million in research grants, host three research symposia and support numerous conferences and meetings. Over those first two decades, our approach to research followed a traditional model and the studies we funded contributed to a knowledge base of 4,000 small studies.
In 2007, we carefully evaluated the gaps and opportunities. Three important themes emerged from this review:
• The literature was essentially a collection of “one and done” studies with few attempts to validate early observations or extend
• Studies were hampered by the use of multiple case definitions and the lack of standardized ways of collecting data about patients or samples from them.
• Research priorities were driven by “in vogue” hypotheses, with few organized efforts to connect the dots or link findings from one study to another.
We knew there was a better way to approach research. In 2008, we added a full-time scientific director, Suzanne D. Vernon, Ph.D., to our staff and we asked donors to help us:
• fund innovative studies;
• leverage existing data;
• strengthen international collaborations;
• recruit new talent to the field; and
• expand communication among scientists to share ideas, knowledge and data.
In February 2012 we announced the creation of the Research Institute Without Walls - representing a different way of working to accelerate the answers that will change patients' lives. Business as usual in research doesn't always work well for patients: the incentives and barriers in the system make it a slow, hard, frequently random process with no guarantee of results. The Association's approach with the Research Institute Without Walls systematically tears down each of those old walls, one by one.
• It forces scientists to collaborate across disciplines, so that new insights are created. For example, the grant to Dr. Dane Cook is a collaboration arising from grants funded in 2009–10.
• It requires information sharing on a common platform, so that approved researchers can access information and make constructive use of it.
• It promotes the use of standard sampling methods and data standards, so that study findings “speak the same language” and are more comparable, better understood and more readily replicated.
• It harvests assets of the SolveCFS BioBank, a wealth of information and samples collected from well-characterized (rather than simply labeled) patients and healthy controls, so that researchers can test new hypotheses and validate past findings.
• It reflects projects chosen for strategic merit, not just scientific merit. Our intent is to drive progress toward disease-modifying treatment, rather than allowing the science to simply drift.
• It will leverage the powerful data mining system, LogosOmix, to scour the existing research literature to identify potential biomarkers to direct future research.
With the Research Institute Without Walls, the Association becomes an active partner with our grantees and CFS patients and their families become partners in research. Through the SolveCFS BioBank and The Catalyst Fund, patient participation is fueling the Association’s transformative research program.