Future Directions 383about the cause and nature of CFS that correspond with the
current cultural predisposition toward holding people more
directly responsible for their own health. A second explana-
tion for these “ndings may involve a general lack of educa-
tion about CFS among medical trainees (13% of advanced
medical students indicated that they had never heard of CFS,
only 21% of them had ever read an article about CFS, and
only 15% had ever known someone diagnosed with CFS).
There is a clear need for a better understanding of how
we might conceptualize the bene“ts and limitations of possi-
ble names for this syndrome. As the process of changing the
name of the illness begins, an advisory committee to study
the renaming of CFS has been organized, called the Name
Change Working Group of the U.S. Department of Health
and Human Services. Continued data-based investigations,
such as the study described, are needed to ensure that any
new recommendation for naming this illness appropriately
conveys its severity and does not continue to stigmatize
patients.
FUTURE DIRECTIONS
When a new disease syndrome emerges, such as CFS, studies
on attributions, diagnostic criteria, epidemiology, subtyping,
and treatment approaches can help shape public policy deci-
sions (Jason, Taylor, Plioplys, et al., in press). Beliefs about
the medical legitimacy of the illness may in”uence federal
and state resources allocated for research, prevention, and in-
tervention (Friedberg & Jason, 1998). Scientists have key
roles to play in investigating issues of attribution as they re-
late to new disease syndromes such as CFS. For example, the
diagnostic label given to this illness, CFS, has been per-
ceived, particularly by patient groups, as functioning to min-
imize its severity and the devastating consequences of CFS.
It is unfortunate that many medical personnel continue to be-
lieve that CFS is a psychiatric disorder. To promote positive
change, scientists should participate in conducting more rig-
orously designed research leading to more accurate diagno-
sis, characterization, and treatment of this disorder.
Throughout this chapter, the threats to reliability and va-
lidity of research resulting from the use of alternative criteria
for diagnosing CFS cases have been emphasized. If inappro-
priate use of the case de“nition leads to the inclusion of
individuals who have a purely psychiatric condition, this het-
erogeneity of patients with CFS and psychiatric conditions
will present dif“culties in interpreting the results of epidemi-
ologic and treatment studies. Inevitably, there is some risk
that samples of individuals with chronic fatigue and some
somatic symptoms include those with solely psychiatric
diagnoses, those with solely CFS diagnoses, and some with
CFS and psychiatric comorbidity. Therefore, these three
groups need to be differentiated and analyzed separately as
opposed to being collapsed into one category.
In addition, diagnostic criteria should be empirically
derived and specify which diagnostic instruments are appro-
priate to use, what informants to use, and how to rate for pres-
ence and severity of the criteria. Future de“nitions of CFS
should include speci“c guidelines pertaining to the impor-
tance of symptom severity in the diagnostic procedure. Given
the high variability in symptom severity among persons with
CFS, a standardized procedure for determining whether a
particular symptom is severe enough to qualify as one of the
four minor CFS symptoms should be employed. Presently,
there are no guidelines for physicians to follow when deter-
mining whether a symptom is severe enough to qualify as
meeting the diagnostic criteria. If CFS is to be diagnosed
reliably across health care professionals, we recommend the
establishment of discrete cutoff points. Without such stan-
dardization, symptom variability will remain a function of
the assessment procedure and etiological factors. If health
care professionals are to improve their understanding of the
complexities of this disease and their ability to identify
distinct subtypes of CFS patients, the current U.S. case de“n-
ition (Fukuda et al., 1994) may need to be revised to clarify
the signi“cance of symptom severity in diagnostic and as-
sessment procedures (Jason, King, et al., 1999).
Fatigue, arbitrarily de“ned as more than one month in du-
ration, is common in the general population, occurring in be-
tween 19% and 28% of the population (Kroenke et al., 1988).
However, severe fatigue is less common, with several studies
suggesting that about 5% of a community sample would have
signi“cant fatigue for six months or more (Jason et al., 1995).
Among this 5% with chronic fatigue, a key question involves
the percentage likely to be diagnosed with CFS, and rates
range from 2.6% to less than .1% (Friedberg & Jason, 1998).
A broad or narrow de“nition will have important in”uences
on both CFS epidemiologic and treatment studies (Jason
et al., 1997). Different CFS criteria clearly account for some
of this variability. In addition, some investigators believe that
while CFS is probably a heterogeneous disorder, it is still
possible to differentiate those having this discrete disorder
from other psychiatric conditions that also encompass fatigue
(Friedberg & Jason, 1998).
Over the past 10 years, a series of key decisions were
made concerning the criteria for diagnosing CFS and the se-
lection of psychiatric instruments, which could alternatively
score CFS symptoms as re”ective of medical or psychiatric
problems. Many of these decisions were formulated within a
societal and political context in which CFS was assumed to