| 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.
Resources
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