Effective name change leadership: An Association update

Our commitment is unequivocal: Leaders of The CFIDS Association of America steadfastly support a name change for CFS. The Association recognizes the stigma associated with the term "chronic fatigue syndrome" and the damage that the name itself does to patients striving for understanding and support from family, friends and health-care providers. In fact, from the time CFS was first proposed in 1987, the Association demonstrated its objection to the term and adopted CFIDS, which had been proposed by a researcher as a more fitting descriptor of the illness. More recently the Association has led responsible and responsive efforts to make progress on a name change and has supported others' constructive efforts.

This spring, to move the issue forward, we developed criteria by which a new name can be judged. These criteria were circulated to a large and diverse group of patients, advocates, doctors and researchers from across the United States and around the world. On April 22 in Washington, D.C., Association Executive Director Kim Kenney presented the criteria and a summary of the comments she received to the federal government's CFS Coordinating Committee (CFSCC), of which she is a member. She also presented a plan to create an international work group to pursue further name change strategies. Both presentations follow recommendations she made at the October 1998 CFSCC meeting in Cambridge, Mass., and both were approved by the CFSCC, which recommended that the Surgeon General implement them immediately. (See DC Dispatch for a report on the April 1999 CFSCC meeting.)

In the last few months we've also:

• Met with Dr. Nicole Lurie, Principle Deputy Assistant Secretary for Health, and other public health officials to emphasize the need for meaningful progress and action at the highest levels of the Public Health Service on the name change issue and to secure a commitment from top health policy makers to assist in the effort. (Feb. 99)
• Formed a (second) Name Change Task Force of the Board of Directors involving other PWC leaders to deliberate and discuss the most effective means of making a name change. (Feb. 99)
• Worked with American Association for Chronic Fatigue Syndrome (AACFS) Board to organize and co-host a name change session at the medical conference held in Cambridge, Mass. Designed and distributed a name change survey to doctors and researchers attending the 1998 AACFS conference; compiled results and presented them at the name change session and the concurrent CFSCC meeting. Held discussions about the name change with advocates from other countries attending the conference. (Oct. 98)

Changing the name will take considerable effort. The community has just one chance to make a credibility-enhancing change of the name. It's important that this opportunity be maximized through thoughtful education and consensus building efforts. There are significant barriers to overcome: there's still no marker or consistent pathophysiologic change on which to base a new name. The term "CFS," even with all its problems, is entrenched in the established medical, research and media organizations around the world. There's no consensus among the patient, medical and government communities on what to change the name to. And there's no clearly recognized path to achieve a name change not based on a specific scientific finding.

The CFIDS Association has been working diligently to break down those barriers and create a foundation for future education efforts. In addition to the current activities listed above, here's a brief summary of efforts the Association has undertaken since 1992 to work toward a successful name change:

• Published two commentary pieces about the name in the Spring '92 issue of The CFIDS Chronicle, the nation's most widely read source of information about CFIDS. (March 92)
• Made a request in the Spring '94 Chronicle asking members to submit possible eponyms for CFS. (An eponym is a term like "Lou Gehrig's Disease" that can be used alongside a medical term.) (April 94)
• Submitted language to Congress requesting the Secretary for Health form a conunittee to investigate alternative names Gune 96); this language was included in Labor/HHS Appropriations bill for fiscal year 1997. (Jan. 97)
• Worked with public health officials to carry out Congressional direction on the name issue. (beginning June 96)
• Provided support for first name change forum organized by name change advocate Roger Burns at the AACFS conference in San Francisco. The Association also used its contacts to boost participation. (Oct. 96)
• Formed first Board Name Change Task Force to acquire more information about views of researchers, physicians and advocates on the name change. (Jan. 97)
• Published an article and a survey about the name change written by Roger Bums in the Winter '97 Chronicle. (Jan. 97)
• Requested that the name change be put on the agenda of the first meeting of the Department of Health and Human Services CFS Coordinating Committee (CFSCC) (April 97).
• Made a formal request that name change advocate Roger Burns be invited to serve as a CFSCC consultant on the name change issue. (May 97)
• Supported Dr. Anthony Komaroff 's CFSCC motion that the name change be on the agenda of every CFSCC meeting, in recognition of the issue's importance. (May 97)
• Conducted a survey of randomly selected Association members (June 97) to develop better information about the range of views on the name change. Survey results and an article about the name change issue were published in the Summer '97 Chronicle (July 97) and on the Association's web site (Nov. 98).
• Participated in first CFSCC workgroup established to investigate name change issues. (Spring/Fall 97)
• Compiled a comprehensive list of alternate names recommended by advocates and presented it to the CFSCC. (Oct. 97)
• Adopted an official position on the name change that expressed firm commitment to a name change based on scientific evidence or to an eponym (naming the disease for a person (or people) who have contributed significantly to recognition of the illness). The Board also acknowledged the contributions of name change advocates Roger Burns and Tom Hennessy. Published the position in the May /June '98 Chronicle and on the Association's web site (www.cfids.org/ news/name/default.html). (March 98)
• Proposed formation of a CFSCC workgroup to draw up criteria by which a new name should be judged to create a framework for further name change discussions. Also recommended that a plan be drafted to form an i-ntemational name change workgroup. Kim Kenney was delegated these tasks by the CFSCC cochairman. (Oct. 98)

The name change is a complex issue with many critical components. A name change will occur only through the education of and action by many different parties and institutions. Support from the medical community for changing the name is essential, because scientists and clinicians will bear ultimate responsibility for getting the new name into the system through constant and consistent usage in medical articles, educational efforts and diagnosing patients. Support of federal health agencies is important due to the credibility these institutions hold with the medical community, the public, the media and lawmakers-the name that agencies like the CDC and NIH use to describe an illness will be noted, accepted and copied. And support from the patient community as a whole is important, so we don't end up back where we are right now-with a name that harms patients through the negative stigma associated with it.

In addition, perceived interference from non-scientists (including patients, advocates and legislators) may be viewed disdainfully by the traditional medical community and may, in itself, impede use of the new name by the most influential (and conservative) medical institutions. So, encouraging productive dialogue between those inside and outside the medical community is essential to understanding and accommodating the needs and motivations of both groups of people.

Most people recognize that once there is an agreed M upon new name for the illness, it's going to take a lot of work to get that name accepted into common usage. It won't happen overnight and the stigma associated with the name won't disappear instantly either. This process will likely come at a cost of credibility and recognition, costs which may come before the benefits of a new name are fully realized. The more all parties are involved in the process of changing the name, the quicker the community will derive the benefits of a new name. We'll need to work together to change attitudes about CFS--by whatever name it is called.

Although there are significant hurdles to overcome to change the name, The CFIDS Association recognizes that these are worthy challenges. The Association is firmly committed to changing the name and, as this article outlines, we are working conscientiously to make that happen as soon as possible.

Responsible leadership on the name change issue requires consistent and steady efforts to educate and build agreement so that change occurs in the most productive and effective manner possible. The CFIDS Association of America is dedicated to responsible leadership and to changing the name. We'll get just one chance to make a credibility-boosting change. Let's do it right.