I’m not sure which way to describe the ME/CFS community reaction to the announcement that Kim McCleary will be leaving the CFIDS Association: that people were so stunned you could hear a pin drop or that the news was the equivalent of a nuclear bomb detonation. Whatever way you describe it, the news is huge.
I worked closely with Kim during my service on the Association’s Board of Directors (2006-2011), and especially during my two years as Chairman. Kim is my friend, and my feelings about her announcement are both personal and professional. Most patients do not know how hard she has worked on their behalf. Kim dedicated herself to our cause, and has made tremendous personal sacrifices in service to that mission. I don’t think there is anyone who knows more about the politics of the disease, and few who understand the research better. In the last few years, she has been instrumental in the transformation of the CFIDS Association into a cutting edge research organization. It’s probably too soon to define her legacy, but she will forever be one of the giants in the battle against ME/CFS.
I know that some in the community will want to rehash various criticisms of Kim and decisions that she made. That’s up to them, but I will not. No one can lead an organization for twenty-two years without there being disagreements and debate. I see little value in revisting them now.
The real issue – and what I believe advocates and patients should be focused on – is where the CFIDS Association goes from here. Can the organization thrive without Kim? The answer is YES. Here’s why the CFIDS Association will continue to succeed:
- Research – The quality of the Association’s research program is unmatched. Faster Cures has included the Association in TRAIN – an initiative that encourages innovation in research and venture philanthropy. Strategic funding decisions have led to a 7 to 1 return on investment. For every dollar Association donors have invested in research grants, those researchers have secured an additional $7 in federal grant money. This success is unparalleled. In a recent webinar, Dr. Vernon described the Association’s cutting edge and unmatched patient-centered approach to research and finding treatments for the ME/CFS.
- Vision – While Kim has been the visionary driver of the Association, the staff and Board are committed to innovation and cutting edge solutions. Suzanne Vernon is a big thinker and is passionate about the Association’s mission. She has recruited new researchers to the field, like Drs. Kathy and Alan Light, Dr. Gordon Broderick, and others. She sees the big picture of the disease, and is always looking for new and innovative ways to attack the problem. The entire staff recently completed a three-year strategic plan, and from what I have heard, Kim’s departure has required adjustments but not fundamental change to that plan. Combining that vision with the expertise of the staff and Scientific Advisory Board means that the Association will not lose step during the transition.
- Staff – Kim has been the face of the Association, but the staff are some of the unsung heroes of this movement. This is not a 9-to-5-it’s-just-a-job group of people. The staff work harder for less reward than just about anyone else I have ever known. Their dedication, expertise, and persistence has made the Association’s success possible.
- New Blood – Mark Stone and Leigh Reynolds have joined the staff within the last year, and both bring expertise from working with other disease populations. They have proven themselves in building other organizations with the support of patient communities, and they are bringing those skills to ME/CFS.
- Profile – The Association is one of the most – if not the most – visible ME/CFS organizations to the outside world. Their proposal took the top prize in the Sanofi challenge. When the XMRV story first broke in 2009, the Board said they wanted the Association to be the source of credible and current news for both the ME/CFS community and others. Both Kim and Suzanne helped raise the profile of our disease by interfacing with new policy makers and influential people, and some of those people now serve on the Association’s SAB.
Kim’s long tenure may have created the impression for some that she was the Association, but that is not the case. The staff, Board, donors, and supporters have always been the lifeblood of the organization, and that has not changed. There is no doubt that Kim’s departure will mean a time of transition for the Association, but the mission and the plan to identify disease-modifying treatment for ME/CFS will go on. Thanks to Kim, the Association is off to a very good start.