By K. Kimberly McCleary
President & CEO of the Solve ME/CFS Initiative from 1991-2013
Tucked into a cove on Long Island’s north shore, five miles from the Cold Spring Harbor Laboratory, is the pastoral Banbury Conference Center. The Banbury Center is located on an estate that was given to Cold Spring Harbor Laboratory in 1976 and is acknowledged internationally to be a superb venue for small scientific meetings. Since opening, over 11,000 scientists – including 41 Nobel laureates – have attended meetings at the Banbury Center. Three stately residences house 35 guests for invitation-only meetings on diverse topics in molecular biology, molecular genetics, human genetics, neuroscience and science policy. The Association’s scientific director, Dr. Suzanne Vernon, had planned four Banbury meetings for the Centers for Disease Control & Prevention (CDC) and had attended two others there. She well understood the center’s reputation for “promoting new ways of looking at problems, new lines of research and new collaborations” and believed this was the ideal setting to convene the Association’s funded investigators for their second meeting of 2009.
Last year at Suzanne’s request, Banbury Center director Dr. Jan Witkowski approved CFS as a meeting topic and together they submitted a grant to the NIH to fund this meeting. The grant application received highly favorable scores from peer reviewers and was funded, providing enhanced credibility (and valuable financial support) to the gathering. Funding was provided by the National Institute of Neurological Disorders and Stroke (NINDS), NIH’s Office of Research on Women’s Health (ORWH) and the Solve ME/CFS Initiative . Dr. Eleanor Hanna of ORWH helped shape agenda and the guest list. Suzanne began planning and asked researchers funded by the Association and NIH to reserve the meeting dates; a handful of experts representing other key research disciplines were also invited to attend
The meeting, “From Infection to Metabolism: A Nexus for CFS,” was held at Banbury Center from September 13 to 16, 2009. Strict confidentiality policies restrict any publication of details about individual presentations, which are treated as “personal communications,” to foster sharing of unpublished data and interim analyses. In light of these restrictions, we’ll convey a sense of the meeting itself and its expected outcomes in guiding research on CFS.
The meeting had three stated objectives:
- To have funded CFS investigators present their latest research;
- To identify common interests and study synergies; and,
- To coordinate funded investigators into an expanded CFS research network.
Sessions were organized into the following general categories: gathering and integration of data for identifying biomarkers for CFS diagnosis and treatment; infectious and immunologic biomarkers of CFS; autonomic nervous system and central nervous system biomarkers of CFS; future directions; and implementing a CFS research network. Participants delivered 20-minute presentations followed by 10 minutes of critical questions and spirited discussion, an essential feature unique to this style of meeting that is difficult to replicate at large scientific conferences. Debates that began in the conference center continued around the dinner table and on walks between venues through the secluded waterfront property.
A small working group of subject matter experts and stakeholders met between the formal sessions to evaluate evidence, suggest paths forward and review points raised during discussions. On the final morning, this group presented its recommendations.
There was broad consensus that a CFS network was essential to accelerate progress and that the Solve ME/CFS Initiative and NIH should collaborate to leverage existing expertise from successful network models like NIH’s Biomedical Informatics Research Network and the National Cancer Institute’s Early Detection Research Network. This CFS network would impact research and patient care, bringing clinical and academic investigators into closer contact and stronger alignment.
As envisioned during the final session at Banbury, the network could be utilized to:
- Engage talented investigators making promising advances in diagnosing CFS and understanding its underlying mechanisms;
- Expand communication among funded investigators;
- Promote enhanced information and data sharing and advanced methods of data analysis;
- Develop standard operating procedures for sample collection, storage and processing and standard protocols for various challenge tests to aid in comparability across research sites;
- Provide assistance to new and/or less experienced investigators; and
- Pool data to better understand natural history and identify biomarkers.
The meeting ended with unparalleled enthusiasm and collegiality for uniting studies and using new tools to deepen insights and advance understanding of CFS. The next day, back in their labs, clinics and offices, participants expressed appreciation for the productive gathering and the relationships established or extended.
“I am back in my office, reflecting on the days we spent together in a beautiful setting dedicated to progress in science and convinced that we did just that. Is there a sound when a tree falls in a forest with no creature to hear? Is there progress when, in our own clinics or labs, we cry ‘Eureka’? Progress comes when we do the research, then bring our findings to multidisciplinary review as we did in Banbury this week. Progress will be faster still if we create a true research network.”
“I had a great time at the meeting. Being a clinician in the trenches can get discouraging due to our lack of biomarkers. The interchange and excitement among researchers at the meeting has recharged my battery! I really gave the disability examiner an earful this morning when she called hoping to disqualify my 50-year-old male patient with CFS from his long term disability plan due to lack of objective markers. Thanks to all, and especially to Suzanne, Kim and Eleanor. It was great to meet everyone.”
“Thank you all once again for having invited me to such an impressive meeting of the minds. These are very difficult and time consuming to organise and I just wanted to let you know that I felt very privileged to attend. I walked away with a whole new collection of ideas for collaborations and look forward to seeing these crystallise. Thank you again for a wonderfully stimulating and thought-provoking meeting.”
“Excellent meeting, impressive science and a wonderful group of scientists (new and old friends). I’m looking forward to raising the bar for CFS research through the network. Thanks to the CFIDS gang for reaching out.”
“Thank you Suzanne, Eleanor and Kim for inviting me and also incorporating the openness for a network with an international potential into the meeting. And thanks to fellow conference participants for acceptance for such. I sincerely appreciate that attitude which will benefit patients and professionals from other contexts and at times less fortunate such. I hope the network will move forward.”
“Suzanne – I think that I can speak for the group in thanking YOU for the extraordinary effort that was involved in getting this together.”
Suzanne is executing the agreed upon action steps from the meeting, and fostering connections between investigators that were begun at the Banbury meeting. We are also incorporating the network concept into our policy work with B&D Consulting to inform Capitol Hill about this promising direction, strengthen support from NIH, and secure access to CFS data collected by researchers at the CDC. You can be sure that you’ll be hearing more about the CFS research network in the coming months as plans progress!
K. Kimberly McCleary served as the Association’s chief staff executive from 1991-2013.October 6, 2009