Eileen Holderman is looking for a little respect. “I’ve been sick for eight years,” says Holderman, a person with chronic fatigue and immune dysfunction syndrome ( CFIDS). “And I’ve grown tired of doctors, co-workers, the media and the public not paying attention to this disease. We need to change the perception that CFIDS is a trivial little illness that doesn’t deserve notice.”

For Holderman, the solution is clear: give CFIDS a new name that will make people take heed. Something medical. Something descriptive. Something that makes CFIDS sound as bad as it really is.

Almost everyone in the patient and medical community agrees that CFIDS is a lousy name for a terrible disease. Advocates believe that words like “chronic” and “fatigue” make the disease sound like a minor irritant instead of the devastating, life-altering illness it often proves to be.

Yet finding a new term has proven extremely difficult. Even as a national committee struggles to complete a report and make recommendations to the federal government, people are lining up on opposite sides of the name-change fence.

The argument against a name change is simple: there’s no better alternative out there at the moment. “We don’t know what causes CFIDS, and we don’t know how to cure it,” says John Trussler, a person with CFIDS and member of the board of directors of The CFIDS Association of America. “I don’t see how we can attach a medical name to a disease we know so little about.

“Of course I hate the current name. But changing it right now is only going to hurt. We’ve come a long way with recognition, and I’m afraid we’re going to give it all back.”

Naming CFIDS has been problematic from the start. The term chronic fatigue syndrome (CFS) was officially coined in 1988 when the U.S. Centers for Disease Control and Prevention (CDC) published its first case definition for the disease. Prior to 1988, CFS had been known as chronic Epstein-Barr virus, or CEBV — a name based on the mistaken idea that the disease was caused by the Epstein-Barr virus.

CFIDS was adopted in the late 1980s on the advice of immunologist Seymour Grufferman, MD. The name reflects the immune system changes that often accompany, or perhaps cause, the onset of CFIDS. Although many medical researchers still use CFS, the term CFIDS has become the most common phrase among advocates and people with the disease.

Calls for a better name have been made for more than a decade. The process picked up momentum in the year 2000, when the federal CFS Coordinating Committee, part of the Department of Health and Human Services, created a Name Change Working Group. The panel has been meeting every two weeks for more than two years to find an alternative to CFS and CFIDS , and is expected to make a recommendation to the coordinating committee later this year.

A number of names have been considered as an “umbrella” term, under which subsets of the disease can fit. Most of these terms involve the phrase “neuroendocrineimmune,” which is supposed to connote the changes in the immune and central nervous systems, and various hormone systems, that often accompany CFIDS. Dozens of names have been discussed, ranging from Florence Nightingale Disease (the famous nurse suffered from a CFIDS-like illness) to myalgic encephalomyelitis (ME), the term for CFIDS in Britain.

The working group conducted a survey last fall and found that more than 90 percent of respondents favored a name change. About two-thirds said they found the term chronic neuroendocrineimmune dysfunction syndrome (CNDS) acceptable, although some objected to the inclusion of “chronic” and “syndrome.”

Holderman thinks the committee is on the right track, and favors the term CNDS. She also thinks terms like “multiple systemic disease” and ME should be strongly considered. Holderman believes that names like these would accomplish three major goals: restoring respect to the patient community; increasing funding for research by making the disease sound more like the serious public health threat it really is; and taking away the government’s “excuse to keep this disease on the back burner.”

There is some evidence that a new name might enhance CFIDS’ reputation as a serious condition. Researchers recently studied the response of 208 nursing and physician assistant (PA) students to different names. The students were given an identical case study of a patient with CFIDS, but the name of the condition was listed in three different ways: “CFS,” “CNDS” or “CNDS, formerly known as CFS.”

The participants were asked to rate the illness severity, prognosis and accuracy of diagnosis in the case study. Results showed that, at least among the PAs, the term played a role in how they judged the severity of the illness. When terms including CNDS were used, the PAs generally viewed the condition as being more severe than they did when CFS was used.   

“The name used does have an effect,” says Leonard Jason, PhD, who was involved in the study and sits on the name change committee. But Jason adds that the name change will need to obtain support from the medical community. Some researchers and doctors object to changing the name without further evidence that the new term is scientifically accurate and relevant. In addition, it will be critical to have support from the patient community and federal agencies like the National Institutes of Health, CDC and the Social Security Administration, or the new name will struggle for acceptance.

Trussler says this point is important. “I think the committee has done an excellent job researching the issue,” he says. “But there just isn’t a good name out there yet. When I tell people about this name (CNDS), they laugh at me. It doesn’t really mean anything. It’s totally unmarketable. And it would work against us in terms of respect and funding.”

As bad as the current names are, Trussler says, as least CFIDS and CFS have a great deal of name recognition. Changing the name at this point would confuse the public, hurt credibility in the medical community and set back the fight to conquer the disease.

“We will only get one shot at a new name,” Trussler says. “I think we should wait until we have something better to base a name on.”

Until that happens, Trussler says the CFIDS community should focus on more productive tasks: “We are spending a lot of time and energy on a new name, and it’s just not there right now. The most important thing, by far, is to find a cause and then a cure. At that point, the name will take care of itself.”

The CFIDS Association of America vigorously supports the ongoing name change process. For more information on the name change, see The CFIDS Association of America’s Web site at www.cfids.org/advocacy/name-change.asp.