From the Desk of Kim McCleary

A little more than 15 years ago, the cover of Newsweek magazine heralded CFS as a modern medical mystery. It happened to be the issue that was on the stands when I first learned the CFIDS Association was looking for someone to run the day-to-day activities. I intrigued by that declaration on the cover, having had my own medical mysteries to unravel. Dr. David Bell’s intense yet compassionate expression on the article’s opening photo layout drew me in. And by the time I finished reading, I was hooked. A few weeks later, I took the job with the Association and adopted a cause that has become my passion.

Over the last 15 years, media coverage of CFIDS has yielded interesting, sometimes unpredictable, results. The greatest response we’ve received to any television broadcast was generated by a story about CFIDS that aired on Pat Robertson’s cable program, "The 700 Club." The most mail we’ve ever received was prompted by a mention in the syndicated newspaper column, "Dear Abby." Laura Hillenbrand’s 10,000-word masterpiece, "A Sudden Illness," won the National Magazine Association’s award for The New Yorker magazine, yet we got almost as much mail after a five-line story ran in AARP’s monthly magazine. The old adage, "any publicity is good publicity" might be true in Hollywood, but we’ve fought back against damaging coverage of CFIDS in every venue from cartoon strips, to sitcom scripts, to articles by renowned journalists writing for prestigious daily newspapers.

The national awareness campaign gives us an unprecedented opportunity to generate coverage of this still-vexing medical mystery and to shape the messages conveyed to the public. We’ll work hard to dispel lingering myths and erase outdated stereotypes. The Centers for Disease Control’s participation will infuse credibility and a cadre of spokespersons will share their stories of how CFIDS has impacted their lives and those of people around them. We’re recruiting medical and research experts, as well as celebrities and thought leaders, to validate and illuminate. We’ll showcase research findings and medical evidence, hoping to impact the legions of health care professionals who have ignored the growing literature and still don’t – or won’t – diagnose CFS and provide even basic symptomatic treatment. Campaign messages are intended to reach the public, and target the 800,000 people who have CFIDS but don’t know what to call it, who question themselves and curse the bodies that fail them. They too should benefit from what we’ve learned over the past two decades.

We have big ambitions for the resources dedicated to this effort. The $4 million CDC’s leadership has dedicated to greater awareness of CFS is a tremendous start. We will make it stretch further than it ordinarily would, through the talents of our partners at Fleishman Hillard and GMMB and the enthusiastic participation of grassroots supporters eager to make a difference. We’ll seek other resources to help sustain our media presence so CFIDS doesn’t fade once the active period of the campaign ends.

Nobody wants another 15 years to pass before we solve the puzzle of CFIDS. I urge you to become a catalyst for change. Please join me and those who have already lent their support and voice to the public awareness campaign – the April issue of CFIDSLink will include information on how you can get involved and help illuminate CFS. With common purpose, we will unravel this medical mystery.