TO TABLE OF CONTENTS
The “Branding” of
Working to change the way
the world views us
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.
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
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
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
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
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
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).
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,
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
? Share your thoughts by e-mailing them to
firstname.lastname@example.org or by writing to us at the address on the inside front cover.
Making the case
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
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
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
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