McCleary’s term as president and CEO of the CFIDS Association of America began in 1991. During her tenure, McCleary shifted the focus of the organization toward research, policy, and education issues. Her goal was to obtain recognition for ME/CFS as a disabling condition, and to influence policy at the national level.
Under her leadership, the Association played an integral part in developing a policy ruling for the Social Security Administration that recognized CFS as a disabling condition. She fought to create and sustain a dedicated federal advisory committee to the Secretary of Health and Human Services on ME/CFS research and education, and helped expose the misappropriation of $12.9 million in CDC spending, restoring these funds to ME/CFS research. McCleary led the first-ever public awareness campaign for ME/CFS, led lobbying events, organized Congressional briefings and delivered testimony at numerous federal hearings and meetings.
McCleary’s strong personal attachment to the ME/CFS community was evident during her resignation speech, during which she listed the accomplishments of the Association, and expressed her commitment to create a world without ME/CFS. In a voice choked with emotion, she lauded the struggles of “family members, parents, spouses, brothers, sisters, sons, daughters who resolve to battle for their loved ones, and all people affected by ME/CFS.” Through tears, McCleary said, “I look forward to watching progress in the days ahead and to celebrating with you when effective treatments and cures return every person living with ME/CFS to lives they dream of living again.”
We look forward to that day as well, and, when it comes, we hope to celebrate it with Kim McCleary.
“Hi, I’m Kim McCleary president and CEO of the CFIDS Association of America. In 1991 I joined the CFIDS Association and this community as the organization’s first chief staff executive. When I came to this organization, I could not have envisioned all the ways in which my work would become my life and how the people I would meet would shape and redefine me. I’ve been honored to partner with thousands of volunteers, nearly a hundred board members, fifty staff members, seven chairmen, and founder, Mark Iverson, to advance our mission. I will always be a vocal champion for this organization and its vision of a world without ME/CFS.
Over the past 22 years I have been part of some incredible work, the drug development and patient focus workshop that FDA will host later this week, launching the world’s first patient-centered virtual institute for ME/CFS, the Research Institute Without Walls, and dozens of events, live and over the web that gave voice to thousands of people with ME/CFS.
I’ve come to know some of these amazing people personally. People who face this uncertain, chronic, debilitating condition with a brand of courage and optimism I don’t think I could muster or sustain: family members, parents, spouses, brothers, sisters, sons, daughters, who resolve to battle for their loved ones, and all people affected by ME/CFS. Each and every person I’ve met through the vital work of this organization has touched my life in ways I’ll carry with me lifelong. Along with my family I will be relocating in June, and it is time to write a new chapter. The vision is clear. The path is laid out before us.
Over the past several months the leadership team has worked together to develop an incredibly strong strategic plan that is already changing the landscape for ME/CFS research to accelerate the path for safe and effective treatments. There is an amazing team in place that will execute that plan and make it reality for you. I pledge my continued dedication through the end of my term in June, and then I will proudly serve as an active member of the Association’s Scientific Advisory Board, so that our work together will not end.
My personal connection to this community will endure and leave a lasting impression on my life. I humbly thank you for the years you have entrusted me to steward this fine organization. I look forward to watching progress in the days ahead and to celebrating with you when effective treatments and cures return every person living with ME/CFS to lives they dream of living again."