By K. Kimberly McCleary
President & CEO of the Solve ME/CFS Initiative from 1991-2013
In December 2008, the Solve ME/CFS Initiative announced research funding decisions following an intensive set of grant reviews for scientific and strategic merit. Six studies will be supported, providing total new funding of $647,940 to six teams of investigators in the U.S. and Canada.
To kick off these projects and the first-ever strategically coordinated CFS research network the studies now form, the Association hosted the first investigators meeting in Charlotte on January 19-20, 2009. Against the backdrop of the inauguration of President Barack Obama, the Association’s scientific director, Dr. Suzanne Vernon, led a jam-packed agenda and arranged mealtimes to enable the scientists and clinicians to get to know one another, understand the aims and designs of one another’s studies, agree on standardized information to be collected on all study participants across sites, and to begin the process of data sharing and marker validation. The Association’s president & CEO Kim McCleary also took part in the two-day meeting, providing the group with an understanding of the Association’s funding strategy and its expectations as the studies get under way. Chief financial officer Kristina Hopkins reviewed reporting requirements and funding procedures.
Additional insights were provided by two of the Association’s scientific advisors: Dr. Lucinda Bateman, a Utah physician and former member of the Association’s Board of Directors who will provide ongoing expert clinical insights into screening and evaluation of CFS patients; and Dr. Satish Raj of Vanderbilt University, a highly respected clinical researcher into autonomic problems common to many CFS patients and relevant to several of the studies.
To contain costs, only the prinicipal investigator and one study co-investigator from each of the six funded research teams traveled to Charlotte for the meeting. A total of 29 collaborators will contribute to these research projects. Dr. Vernon will maintain ongoing communication with each of the teams and across the independent sites and will function as a conduit for new insights, a trouble-shooter for difficulties that arise, and will help investigators meet performance measures and milestones they defined in their original grant applications. A mid-term investigators meeting will be held in September 2009 at the prestigious Banbury Center of Cold Spring Harbor Laboratories. The teams and several of the Association’s scientific advisors and partners will present preliminary data, further calibrate methods and formalize collaborations to replicate and/or validate interim observations.
By the time the January meeting had wrapped up, the nation had witnessed the peaceful transfer of executive authority and the CFS community had marked its own change – the formation of a long-awaited coordinated network of committed scientists working together to discover better methods of diagnosing and treating CFS.
February 1, 2009