trainees' reactions to three names for CFS
Leonard A. Jason, PhD, Renee R. Taylor, PhD, Sigita Plioplys,
MD, and Zuzanna Stepanek, BA.
excerpts from a paper (abstracted at right) reporting on a new study that examined the implications of
the name assigned to an illness.
Subjects were 105 medical trainees in Chicago--half of
them medical students and half residents in either psychiatry or family practice. They were randomly assigned
to three groups. Each group was given the same case study of a patient with classic symptoms of chronic
fatigue syndrome (CFS), with the only difference being the name assigned to the illness. Then each group
was asked a series of questions about the patient and the illness.
For one group, the patient
was described as having CFS, for another, Florence Nightingale disease (FN), and for the third group,
Myalgic Encephalopathy (ME). The names were selected because CFS is the currently accepted term and the
other two have been mentioned frequently as possible alternative names.
percent of those assigned to the FN case study and 41% of those looking at the CFS case study responded
that it was likely or very likely that the patient would improve, but only 16% in the ME condition thought
it was likely or very likely that the patient would improve. This suggests that medical trainees perceive
the ME label as being indicative of a more chronic and debilitating illness as compared to the labels
of CFS or FN.
Fifty-four percent of individuals in
the CFS condition indicated
that the person was likely or very likely to have been correctly diagnosed, as compared with 28% and 19%
from the ME and FN conditions, respectively. This was not surprising, since more medical trainees were
probably aware of the term CFS than the terms FN or ME.
Forty-seven percent of those in the
FN condition indicated that it
was likely or very likely that the illness was the result of an undiscovered infection, cancer or other
illness, whereas only 28% and 22% of those in the ME and CFS responded in this way. This was understandable,
as many trainees probably had never encountered the term FN before, so they were more likely to perceive
it as an illness that was due to another more explainable cause.
Other differences between the three
name groups were not statistically
significant but still of considerable interest. A greater proportion of trainees in the ME condition attributed
the illness to medical causes (39%) as compared with trainees in the FN (30%) and CFS (22%) name conditions.
Thus, it appears as though the ME name may have prompted more medical attributions than either the FN
or CFS labels. When the medical trainees were asked how they would treat the patientís illness, 67% of
trainees in the CFS name condition indicated that they would use some form of psychiatric intervention
to treat the patient (psychotherapy and/or psychotropic medication), as compared with 53% of trainees
in the FN condition and 48% of trainees in the ME condition.
Also, only 3% of the entire sample
of medical trainees indicated
that it was likely or very likely that the patient was malingering (feigning illness for secondary gain)
(5% for CFS, 3% for FN, and 0% for ME). With regard to the severity of the illness, 67% of the entire
sample indicated that the illness described was severe or very severe (62% for CFS, 67% for FN, and 72%
for ME). In terms of disability, 57% of the entire sample rated the patient as being severely or very
severely disabled, and 82% of respondents rated the overall quality of life of the patient as moderately
poor or very poor. Among the entire sample of medical trainees, 43% felt it was likely or very likely
that the illness may be stress-related and 37% felt that the patient was suffering primarily from depression.
With respect to cognitive impairment
and pain experienced by the
patients, these items were rated as severe or very severe by only 10% and 19% of the entire sample of
respondents, respectively. These findings indicate that all three labels are considered as having a serious
negative effect on the overall quality of life (although not in terms of cognitive impairment or pain).
In addition, results suggest that medical trainees do not consider these conditions as a result of malingering,
although a minority of trainees indicated that the symptoms might be caused by either depression or stress.
Thirty-six percent of respondents felt that it was likely or very likely that the patient would attempt
suicide within the next two years.
Further analysis revealed that psychiatry
residents were less likely
than medical students to think of the patient as malingering. Also, psychiatry residents rated the quality
of life of patients as significantly worse than did medical students, and they were more likely to think
the patient might attempt suicide within the next two years.
At the end of the study, all the participants
were asked a series
of questions to ascertain their familiarity with CFS. There were no significant differences across the
name groups. However, there were differences among the medical trainees by specialty--medical students,
family practice residents and psychiatry residents.
For example, 100% of family practice
and psychiatry residents had
heard of CFS, but only 87% of medical students had heard of this syndrome. Only 21% of medical students
had read an article about CFS, whereas 40% of family practice and 90% of psychiatry residents reported
having read an article on this topic.
In general, findings indicated that medical students and residents considered the
as a serious health problem, regardless of whether it was labeled CFS, Florence Nightingale disease, or
Myalgic Encephalopathy. Also, individuals appear to differ in their attributions about certain aspects
of the illness depending upon the way it is labeled. These attributions may, in part, be due to the medical
terminology contained in the Myalgic Encephalopathy label, which may lead individuals to think that the
illness is more severe and is more likely to have biological underpinnings. There are many ways of interpreting
findings such as these, but in general, it does appear that differential attributions arise from the use
of these different labels.
It was interesting that the psychiatric residents perceived the
syndrome described as more serious and disabling than medical students or family practice residents. In
addition, findings that psychiatric residents were more knowledgeable about CFS suggest that those who
are in psychiatric residency programs may have more training and experience in treating patients with
these types of complex disorders, and as a consequence, might be more willing to view syndromes such as
CFS as serious, legitimate illnesses.
It is possible that medical professionals and society
at large feel uncomfortable with not knowing the cause of CFS. As a result, many may attribute psychosocial
or psychological causes to the development of CFS as a means of reducing discomfort surrounding this ambiguity.
When an illness is attributed to psychological factors or other characteristics of an ill individualís
selfhood, and when the name of the illness tends to downplay the seriousness of its symptoms, the individual
might be viewed as responsible for the development and "cure" of the illness. This process, while invalidating
to patients, relieves medical professionals and society at large from the responsibility to develop programs
for individuals and aggressively seek effective treatments and therapies.
Many CFS activists
have argued that the current name contributes to the invalidation and stigmatization process. Due to the
controversy surrounding the name and diagnosis of chronic fatigue syndrome, people with the illness frequently
face disbelieving attitudes from their doctors, family and/or friends, and many experience profound losses
in their support systems.
Name changes that have occurred with other illnesses have reduced
stigma. For example, Gay Related Infectious Disease had less scientific information available when the
name was changed to AIDS. Multiple sclerosis (MS) was previously thought to be caused by stress linked
with Oedipal fixations. When the name of the disorder changed from hysterical paralysis to MS, when no
more scientific information was available than we currently have for CFS, less stigma was associated with
Some have argued that to rename CFS as Myalgic Encephalopathy or "ME" will
only contribute to further stigma, because it is possible that CFS will become known as the "ME disease."
The present study suggests that the use of the term Myalgic Encephalopathy does not appear to elicit negative
types of attributions, at least in a sample of medical trainees.
When a new disease syndrome
emerges, such as CFS, studies on attributions can shape public policy. Issues involving medical legitimacy
of the illness may influence federal and state resources allocated for research, prevention and intervention.
The name given to this syndrome has been perceived, particularly by patient groups, to minimize its severity
and its devastating consequences. To promote positive change, scientists should conduct more rigorously
designed research that better measures attributions given to different names for this illness. There is
a clear need for more research to help set the agenda for how we might conceptualize the benefits and
limitations of different possible names for this syndrome.
Drs. Jason and Taylor and Zuzanna Stepanek are affiliated with DePaul University; Dr. Plioplys is
affiliated with the University of Illinois.
Evaluating Attributions for an Illness
Based upon its Name: Chronic
Fatigue Syndrome, Myalgic Encephalopathy and Florence Nightingale Disease
recent years, considerable discussion has occurred about stigma surrounding the name of an illness currently
known as chronic fatigue syndrome. Although patients and medical personnel have expressed varying
opinions on this issue, few studies have evaluated how attributions about the illness change based upon
the way it is named. In the present study, attributions about this illness were measured in three groups
of medical trainees. All groups read the same case study of a person with classic symptoms of chronic
fatigue syndrome, with the only difference being in the way that the personís illness was named. Following
the case study, the trainees were asked to provide attributions about certain aspects of the illness,
including its cause, severity and prognosis. Findings indicated that medical trainee attributions toward
this illness change based on prompting with different names to describe it. Implications of these findings
are discussed herein.