The e-mail came to me last year from a CFS patient named Pamela Wong. It was about the new national CFS public awareness campaign. “Great work on launching the campaign,” I read. “Thank you for all your work on behalf of CFS patients who cannot work on their own behalf. So many people have waited decades for this and we are expecting big things. Please keep up the good work and don’t let our hopes be dashed.”
It was the “don’t let our hopes be dashed” that got me. Because I realized that her fervent wish echoed that of countless other people who are also desperately hoping this campaign will help transform the social, political, media and medical landscape for CFS. Because of the awesome responsibility I, and all my colleagues at the CFIDS Association, feel to make sure this campaign makes a difference. Because funds for the campaign are limited to only $4.5 million, and that’s a pittance to run a national public health campaign that’s supposed to move hearts and change minds.
Today, several months after that e-mail arrived, I can tell you how many times the PSA has aired so far, and which stations in which cities have aired it. I can tell you approximately how many stories have appeared in newspaper, broadcast or online media outlets. I can tell you how many people have downloaded the patient brochure and the CFS toolkit. And I can tell you how many times the print ads have appeared and how many millions of “media impressions” that translates into so far. And those barometers of success are important. In fact, some of these statistics can be found in this issue of the CFIDSLink, and they’re incredibly encouraging.
As an experienced communications professional, I know it will be months, even years, before we can really fully assess the results of a campaign that hasn’t reached the halfway mark yet. But with Pamela’s plaintive “don’t let our hopes be dashed” still fresh in my mind, I have looked for early feedback from the people—CFS patients and the friends, family, co-workers and medical professionals who care for them—who can give me the barometer that really matters most. Let me share just one of many stories that I hope will be a harbinger of things to come.
The voice on the phone was faint, and I could tell she was close to tears, struggling to keep her composure. When the call started, she was a stranger to me, but as so often happens when I talk with patients, she was a stranger no longer when the call ended 30 minutes later. Her name was Sandra Francis, and she had something to say.
“I’ve had this terrible illness for 18 years. I tried to work for the first few years after I got sick, but finally had to take disability. I tried so hard to stay positive in those early years, and people at church would always tell me what a great attitude I had. But CFS has lasted so long and taken so much from me.
“I have six siblings, and five of them won’t have anything to do with me anymore because they think it’s all in my head, or that I could do more if I only wanted to or tried harder. My 21-year-old daughter doesn’t want me to talk about being sick. She’s sick of me being sick. And she’s angry. I’ll tell her about fun things we did when she was a little girl, but she says she can’t remember a time when I wasn’t ill.
“And then a few months ago I got a letter from someone who’s been my best friend for the last 28 years telling me she couldn’t come to see me anymore because it upsets her too much. My husband was afraid to show me the letter.
“So when last night while we were watching TV we saw the new PSA on chronic fatigue syndrome, I was so excited! I just can’t tell you what it was like to see this on TV—it was on in Erie, Pennsylvania—and realize that people who know me were seeing it at the same time. You just don’t know what it means to me. Thank you, thank you, thank you.”
Every week I hear from people who want to share their reaction to seeing the TV PSA, hearing one of the radio PSAs, seeing an incredible news story on TV that validates the illness, reading an article in their hometown paper about how CFS has devastated lives, visiting the traveling photo exhibit and seeing their own story reflected in the stories of others, or reading the campaign brochures.
I also hear from people who are still waiting for the PSAs to be played on their hometown stations, or for their local paper to run a story about CFS. And I hear from patients who wish the print ad or the PSA focused on a different aspect of CFS, or who are frustrated by a sentence or phrase in one of the media stories they read.
I know patience is a hard virtue to conjure up after waiting so long for things to change, but hang on! The campaign is still unfolding, and the CFIDS Association is working hard to make sure our collective hopes for this historic campaign aren’t dashed. One campaign won’t magically transform how CFS is regarded on Capitol Hill, in your doctor’s office, and in the hearts and minds of your family and colleagues, but it can—and will—make a real difference. Together, we can make it happen.