RETURN TO TABLE OF CONTENTS
Summer 2003 

The “Branding” of CFIDS
Working to change the way the world views us
ByKim Kenney

Call it public awareness. Education. Marketing. Public relations. Aside from a cure, it’s what people with CFIDS (PWCs) say they want most. They want CFIDS to be discussed with the same “respect” associated with cancer or heart disease or multiple sclerosis. They want relief from the burden of having an illness that is widely misunderstood, regularly diminished and frequently derided. They want credibility. Understanding. Acceptance. Empathy.

The situation is improving. The unbridled success of author Laura Hillenbrand’s account of 1930s racehorse Seabiscuit has brought her a high degree of public visibility. She has responsibly used the spotlight to share her own against-all-odds story of the 16-year battle she’s waged with CFIDS. Articles about her fight in The New Yorker magazine, Newsweek, Smithsonian, USA Today, The Washington Post and numerous other publications, complemented by appearances on “20/20” and hundreds of radio programs, are making an impact on how the public views the illness.

And cutting-edge research, led by scientists at the Centers for Disease Control and Prevention (CDC), is illuminating the subtle, sophisticated interplay of abnormalities in the immune, neuroendocrine and central nervous systems that may explain the perplexing syndrome. Provider education efforts are reaching health care professionals; they report greater confidence in making a CFIDS diagnosis, but tremendous frustration with the present health care system that makes managing chronic illness a tormenting challenge for patients and providers.

Still, on a personal level it takes just one insensitive remark to reduce this sense of progress to despair. Offhand comments like, “I’m tired all the time too — I must have that,” remind us how far we still have to go.

The name game
In 1988, the original case definition was published, coining the term “chronic fatigue syndrome” (CFS) and providing criteria by which to evaluate possible CFS cases for research purposes. Soon after, PWCs launched efforts to rename the illness. They objected to the singular focus on fatigue, a common symptom and an imprecise term. Despite the rapid introduction of the alternative “chronic fatigue and immune dysfunction syndrome” ( CFIDS) and perpetual promotion of the historical term “myalgic encephalomyelitis” (ME), the term CFS has persisted — and so has the loathing it inspires.

A name change working group convened three years ago by the U.S. Department of Health and Human Services (DHHS) has surveyed patients and providers, held discussion sessions at research conferences and surveyed the literature, all in hopes of establishing consensus for a new term that reflects the wishes of the patient community and can be supported by objective evidence. Their recommendations have stalled while waiting for a broader DHHS advisory committee for CFS to be assembled. Members of the working group have settled on a new term — “neuroendocrineimmune dysfunction syndrome,” or NDS — to describe a condition slightly broader than the one identified by the current CFS definition. But working group members recognize that without a serious and sustained public education campaign to announce the change, the cumbersome term for the larger “umbrella” classification of illness may never be fully adopted. 

A new approach?
Creating a distinct image through the choice and promotion of a name is the daily work of professionals who engage in a select type of marketing known as “branding”.

Now common corporate practice, branding is increasingly being used by not-for-profits and other institutions to change societal views and, ultimately, individual behavior.

The patronizing, preachy approach of public health campaigns like “Just Say No” is being replaced by clever, pop culture-driven messages that appeal to a more media-savvy public. CDC has used a campaign called “VERB” (www.verbnow.com) to encourage kids to engage in more physical activity, in hopes of curbing the epidemic of obesity and Type II diabetes in young people. TheTruth.com uses gritty urban images and shocking statistics to turn people against “big tobacco” and tobacco use.

Branding engages people in an unexpected way; it creates a unique space in the consumer’s mind for a product, service or issue. As a brand, “chronic fatigue syndrome” has little going for it. The word “chronic” suggests whininess. “Fatigue” is an everyday experience in our overscheduled world. “Syndrome” seems to say “not quite a disease,” at best. Images of unfulfilled, neurotic housewives and burned-out professionals linger, even though the term “yuppie flu” is rarely used these days. The lack of scientific consensus, the absence of a diagnostic test and the difficulty of trial-and-error symptomatic treatment may be more closely identified with the term than any of the abnormalities supported by the research literature.

Building a memorable brand
Brand development forces discussion about strategic priorities and direction. The process requires research-based decision making, broad participation across multiple stakeholder audiences and formation of strategic partnerships to implement strategies. It also requires the investment of considerable intellectual and financial resources, over many months.

Branding involves more than choosing just a catchy name or pleasing logo. Credible and consistent messages, accompanied by one or more distinctive visual images, must be repeated over time and in a variety of venues. With branding, you must determine not only what facts you wish to convey, but the emotions you would like to invoke and the actions you want people to take. This specialized approach cuts across many dimensions of understanding.

Strategic decisions
The brand chronic fatigue syndrome, while problematic for many reasons, still carries with it some recognizability. When companies evaluate a particular product or service brand, they conduct research to determine whether it is more effective to launch a different brand or to “re-brand” an existing one. There is merit to exploring this topic with regard to chronic fatigue syndrome, to ensure that our assumptions about what the broader public “thinks” about chronic fatigue syndrome are accurate.

The outcome of this market research may suggest a new name (e.g., NDS), an alteration to the existing name (for example, branding “CFS” rather than chronic fatigue syndrome) or maintaining the existing name, but changing perceptions about it. It’s important that every effort be made to transfer value in the existing brand to the new one, while minimizing negative “baggage” that may persist independent from the name itself (see box).

Feasible? Worthy?
The CFIDS Association of America has been investigating the merits, strengths and drawbacks of employing branding strategies to deepen understanding about CFS. We have consulted with branding professionals, with public health educators experienced in the use of branding and with patient advocates. The opportunities such a campaign would enable are very exciting. It is a multi-faceted approach to addressing nearly all the issues raised in the context of a name change, although setting realistic expectations for the impact of the campaign is an important part of planning, too.

We’re interested in your thoughts. What messages would you like to send to the general public, to the medical community, to the media? Is there any “value” to be preserved from the name “chronic fatigue syndrome”? Can branding strategies help raise awareness, educate and improve credibility? What can the general public do to help those with CFIDS ? Share your thoughts by e-mailing them to branding@cfids.org or by writing to us at the address on the inside front cover.

Making the case
On paper, CFIDS certainly warrants more broadly based and vigorous efforts to understand, treat and prevent it. A study published in the July 14, 2003 issue of Archives of Internal Medicine makes the case well. CFIDS is among the most prevalent chronic illnesses of our time, affecting approximately 800,000 U.S. adults and an unknown number of adolescents and children. The vast majority of those who would meet the strict research definition for the illness don’t have a name for the poor health and reduced function they endure; this report indicates that 80 percent of those with CFS have not been diagnosed. An earlier study from DePaul University placed the figure at 90 percent. And soon, CDC will report the direct economic impact of CFS. Estimates approach $10 billion a year, even without including the cost of medical care or disability benefits.

CFIDS is a big problem — for individuals, for our medical care system, for our economy and for our nation. Whether we can marshal adequate resources to improve recognition of all the ways in which CFIDS impacts our lives remains to be seen. Branding offers a new approach to addressing problems we have wrestled for almost two decades. With the heightened visibility of the illness brought by Laura Hillenbrand and Seabiscuit, there may never be a better time to try it. Just as in horse racing, the stakes are high and the risks are real. But in the credibility contest, the rewards are great too.

Kim Kenney is president & CEO of The CFIDS Association of America.