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Advocacy Archives: Name Change

The name "chronic fatigue syndrome" is problematic, misleading and does not adequately describe the serious and complex nature of the illness or the severe impact it has on a person’s life.

Chronic fatigue syndrome was first used officially in 1988 when the U.S. Centers for Disease Control and Prevention (CDC) published a case definition for the illness to aid in the selection of subjects for research. It was formerly (and incorrectly) known as chronic Epstein-Barr virus (CEBV) because of a hypothesized link between chronic fatigue syndrome (CFS) and this common virus. Later, it was shown that EBV is no more common in CFS patients than it is in the general population, so this name was dropped.

In the late 1980s, the CFIDS Association of America took its name on the advice of immunologist Seymour Grufferman who suggested that the illness be called "chronic fatigue and immune dysfunction syndrome" (CFIDS) rather than "chronic fatigue syndrome." He proposed this alternative to reflect the immune abnormalities and dilute the misunderstandings from "fatigue" being the key feature of the name. The term "CFIDS" was embraced by advocates eager to dispel myths about the illness and reduce the stigma attached to it.

Imprecise and Stigmatizing, Yet Recognized
Chronic fatigue is a universal experience -- nearly everyone feels tired at some point, whether due to overwork, stress or a medical condition. By comparison, chronic fatigue syndrome (CFS) is considerably less common, with only 0.2-0.4% of the population meeting the official definition for the illness. The name does not readily differentiate CFS from other causes of fatigue and leads people to think -- erroneously -- that fatigue is its only symptom.

Not only is the name imprecise, but it also carries a negative stigma with medical professionals and the general public, which hinders patients' access to medical care and social services. A study at DePaul University found that the name itself may influence the type of medical care a person is offered. Medical trainees were presented with identical patient case studies labeled with the diagnosis CFS, myalgic encephalomyelitis (ME, the name used for CFIDS in the U.K.) or Florence Nightingale disease (Nightingale is rumored to have had a CFIDS-like illness). Trainees who received cases labeled CFS were less likely to attribute the illness to medical causes and more likely to prescribe psychotherapy and/or psychotropic medications. Research studies have found that psychological treatment is unlikely to affect the underlying CFS medical illness, but may help the patient cope with the life-losses caused by having a chronic illness.

On the other hand, CFS is a fairly well-known condition -- 100% of family practice and psychiatry residents and 87% of medical students in the DePaul survey had heard of CFS. 62% recognized CFS as a severe or very severe condition and 41% thought that it was very likely that the patient would improve. (Studies estimate that about 1/3 of people with CFS/CFIDS recover, although no one knows why some people recover and others don't.)

And the term is entrenched in medical, research and media organizations around the world. Additionally, there is considerable medical literature on CFS. More than 2,000 peer reviewed medical articles have been published under the CFS name.

Changing the name will entail considerable re-education of health care professionals, those who suffer from the illness and the general public. Initially, there will likely be less understanding of the "new" condition than there is of CFS. This education process could take a while -- there are still people who refer to CFS as "chronic Epstein-Barr virus," which was only used for a few years and replaced in 1988.

The Options
There are two ways that a name could be developed to replace CFS:

  • A new scientific name would reflect the medical underpinnings of the illness. The main problem with this approach is that there is little agreement among scientists about which medical elements are key to the illness.
  • Naming it after a person or place that is significant to CFS. An example of an eponym, as this is called, is Lou Gehrig's disease, otherwise known as amyotrophic lateral sclerosis (ALS). The drawbacks to this choice are that eponyms are unpopular with scientists and there is little agreement on who or what it should be named after. In addition, CFS would continue to be used as the "scientific name," so using an eponym would not fully replace CFS.

The Challenge
The challenge, then, is developing a new name that is more precise, less stigmatizing, and will be readily accepted by the scientific community.

In 2001, the Department of Health and Human Services (DHHS) Chronic Fatigue Syndrome Coordinating Committee (CFSCC) established a workgroup to study the many issues involved in changing the name “chronic fatigue syndrome” to a more suitable name. The CFSCC was dissolved prior to submitting its recommendations, including the proposed term neuroendocrineimmune dysfunction syndrome (NDS), but written recommendations were presented to the new CFS Advisory Committee (CFSAC) , which first convened in September 2003.

On December 8, 2003, the CFSAC released a position statement on the name change. In summary, the committee states that "chronic fatigue syndrome" is a poor name, but recommends that a change to another name should occur only when there is a better understanding of the pathophysiology of the illness. The statement continues, "Current efforts should be increased in the area of understanding illness subtypes which in itself may lead to a more appropriate name. Furthermore, the disrespect experienced by patients from both general public and medical community should be aggressively addressed."

The CFIDS Association understands the rationale behind the CFSAC position on this issue, but notes that the lack of scientific knowledge concerning the pathophysiology of this illness is the direct result of inadequate federal support for CFS research. And on December 10, 2003, the Association released its own statement urging the CFSAC to expeditiously propose to the DHHS Secretary of Health a series of specific recommendations that would: aggressively accelerate the breadth, depth and pace of CFS research; educate the medical community about diagnosing and treating CFS; and actively seek and find ways to address the disrespect experienced by people with CFS. More information on the name change issue, including Name Change Workgroup reports and position statements issued by the Association and the CFSAC can be found by clicking on the links below.