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Fall 2003 

Association News
Activities and oppotunities from The CFIDS Association of America

Branding generates response
An article in the summer 2003 Chronicle explored the use of "branding" strategies to elevate awareness and deepen understanding of CFIDS. Questions raised in the article about the name "chronic fatigue syndrome" may have been mistaken for a shift in the Association’s policy on the name change. In 1998 The CFIDS Association of America’s Board of Directors adopted the following policy statement on the name change: "The Association’s Board is solidly committed to facilitating a change from the name ‘chronic fatigue syndrome’ to a name that more accurately describes the illness and leads to greater acceptance of the illness." This policy continues to guide Association activities related to the name change.

Although the name of a product or cause is an essential element of any branding or education campaign, in the case of renaming CFS, the decision about what to call it must be considered in a broader context. The two processes — building consensus on a name change and developing a public education and advocacy campaign — can occur simultaneously, as long as there is continuous sharing of information to maximize the success of both efforts in enhancing the credibility of CFS. In fact, when the name is changed, a cohesive education campaign will be paramount to the public’s acceptance and adoption of the new term.

Branding may need some image enhancement of its own. A few readers responded with disdain for the "Madison Avenue spin" approach to expanding awareness. However, a true branding campaign is the antithesis of "spin," because it seeks to create a positive social context that enables advocacy to create results — not to make temporary adjustments in public perceptions. In the case of CFS, the goal is to create empathetic public awareness for CFS as a means to create changes in public and social policy, public health and private health care treatment.

CFIDS identified as research priority
The National Institute on Disability and Rehabilitation Research (NIDRR), a component of the U.S. Department of Education, has identified CFIDS as an "invitational priority" in its Sept. 25 announcement of $4.5 million in field-initiated research grants. NIDRR funds research into methods, mechanisms and technologies that maximize disabled persons’ inclusion and integration in social, educational and employment activities.

The Association has been invited to participate in a Department of Education event to highlight this grant announcement. The department will celebrate PWC Laura Hillenbrand’s accomplishments and feature her inspiring story in its press kit. Laura is not able to be present; her partner Borden Flanagan has been asked to share how they used technology to enable her to research the story of Thoroughbred racing legend Seabiscuit for her best-selling book.

Study leads to Web hits
This summer the Associ-ation was a pro bono participant in an online survey project conducted by Mindshare Internet Campaigns. As part of a case study, Mindshare created and placed banner ads for the Association and other groups on The New York Times Web site. The project sought to test whether proximity to online content affects the likelihood that a user will click on a banner ad for a non-profit group.

Although the results are preliminary, 59 percent of people who clicked on the ad and filled out a survey indicated they had heard of CFIDS and were looking for more information. During the campaign, the Association received one million free impressions on the Times site — resulting in increased traffic on the Association’s Web site, www.cfids.org.