From the Desk of K. Kimberly McCleary
Ass't Secretary for Health John Agwunobi, CDC Director Julie Gerberding and Kim McCleary pause before the press event. Banners from the "Faces of CFS" exhibit, featuring CFS patient Wilhelmina Jenkins, provide the backdrop.
This past weekend, as our Board reflected on the November 3, 2006, press event, one director described it as a "crescendo"—many forces coalescing and cresting at once. Our advocacy work to get the government’s outspoken validation of CFS as real, serious and deserving of greater attention and research. Our education efforts to develop messages and stories that would resonate with a broad variety of media outlets reaching the public, health care community and industry. Our efforts to expand research, by funding pilot studies and pushing the government to fund more and better studies. And our efforts to support the patient community until scientific breakthroughs lead to diagnostic markers and improved options for treatment.
I also realized it was, in many ways, the culmination of everything I have worked for over the past 16 years. Standing at the podium, before multiple camera crews, dozens of reporters and other distinguished guests at the National Press Club, it was hard to contain my emotion as I thought back to what had brought me to that moment.
It had been 16 years, almost exactly to the day, since a call from a former client about the CFIDS Association’s search for someone to run the day-to-day operations prompted me to purchase the November 10, 1990, issue of Newsweek magazine, the one with chronic fatigue syndrome on its cover. In its pages I met Marc Iverson, the Association’s founder, and other patients and researchers fighting for research and respect. In their stories, I recognized my own struggles with lesser-known medical conditions and dismissive doctors. I sensed their despair at not being believed by friends and family. I became intrigued by the medical mysteries slowly revealing themselves in the work of a few committed scientists. Geoffrey Cowley’s long cover story gripped me emotionally and intellectually, and I dared to think that maybe there was something I could do to help.
By February 1991 I had joined the Association’s staff and thus began this incredible journey that would constantly present new challenges, test my skills and determination, and introduce me to courageous people who would reinforce my resolve to bring an end to the suffering and disability caused by CFS.
So it was deeply fulfilling to be part of last week’s milestone event, sitting alongside CDC Director Dr. Julie Gerberding, Assistant Secretary for Health Dr. John Agwunobi, NIH Office of Research on Women’s Health Director Dr. Vivian Pinn, Drs. Anthony Komaroff and Nancy Klimas and recovered patient and friend Adrianne Ryan. It was moving to hear their messages, echoing the severity and complexity of CFS and reiterating that patients deserve care, compassion and understanding. And now, to see the astounding expanse of media coverage, literally from around the globe. The United Press International wire story headline says it all: "CDC: Chronic fatigue syndrome is real, brutal."
November 3, 2006, marks the end of a great deal of work and effort by hundreds, if not thousands, of people to achieve this pivotal "moment" in our collective history. However, if we’ve done our work right, it really marks the beginning. For now, we must capitalize on the opportunities we’ve created to make real differences happen in research, policy, care and support. I am absolutely convinced that we have never been better positioned for remarkable progress than we are today.
I offer my deep and sincere thanks to all who contributed to the success of the press event and to all who will help us sustain this unprecedented momentum. It is a great honor to be part of this historic moment.
K. Kimberly McCleary
President & CEO
The CFIDS Association of America
In recent months, CDC director Dr. Julie Gerberding has received over 1000 messages from people with CFS and the friends and family who care about them. She’s expressed that the outpouring of heartfelt and informative stories has moved her personally and professionally.
Click here to send a message to Dr. Gerberding, thanking her for the CDC’s efforts and making sure that the CDC’s leadership knows how important this public awareness campaign is to the CFS community.