"Researchers and clinicians need to
be aware of the strong sentiments that patients have
for [the name, definition and classification of] Myalgic Encephalomyelitis, which is historically correct
(Ramsay, 1981) and has been used internationally (Hyde, Goldstein,
& Levine, 1992)."
-Dr. Leonard Jason-
In recognition of his
contribution to the ME and CFS community, Dr.
Jason received the Dutch ME-Foundation International
ME-Award for 2003 for outstanding work in the previous 10 years in the
field of Myalgic Encephalomyelitis/chronic fatigue syndrome. Dr.
Jason is co-author of the
Handbook of Chronic Fatigue Syndrome, and former Vice-President of
where he continues to serve on several committees. He has
also served many years on the
CFS Advisory Committee at the US Department of Health &
Dr. Jason's research group at DePaul University has been so
prolific with their publications on ME/CFS that it would be
impractical to list them all here. Instead, we've attempted to
summarize Dr. Jason's contributions to ME/CFS research,
particularly in the areas of name attribution, epidemiology,
case definition and mortality studies. For more than a decade, Dr. Jason and his
team at DePaul University’s Center for Community Research have
worked to define the scope and impact of ME/CFS worldwide.
complete reference list of articles and books by Dr. Jason's
team at DePaul University.)
Two studies explored whether alternative names for CFS (e.g.,
chronic fatigue syndrome, Myalgic Encephalopathy) do influence
attributions by medical trainees, and college undergraduates regarding this syndrome. Participants were
randomly assigned to two groups, with the difference between
groups involving the type of diagnostic label given for a case
description of a patient with prototypic symptoms of chronic
fatigue syndrome. Results showed that participants' attributions
about CFS varied on the basis of the different diagnostic labels
used to characterize it. The Myalgic Encephalopathy label was
associated with the poorest prognosis, and this term was more
likely to be associated with a physiological rather than a
psychological cause to the illness.
Many patient groups believe that changing the name from Myalgic
Encephalomyelitis to CFS was thus a major contributing factor to
the stigmatization of this illness.
attributions for an illness based upon the name: Chronic fatigue
syndrome, Myalgic Encephalopathy and Florence Nightingale Disease.
(Abstract) Jason, L.A., Taylor, R.R., Plioplys, S., Stepanek, Z.,
& Shlaes, J.(2002). American Journal of Community Psychology,
30,133-148. "All groups read the same case study of a person
with classic symptoms of chronic fatigue syndrome."
"...findings indicated that the name, chronic fatigue syndrome,
may be regarded less seriously than the Myalgic Encephalopathy
name with respect to some important aspects of the illness."
Attitudes regarding chronic fatigue syndrome: The importance of a
Jason, L.A., Taylor, R.R., Stepanek, Z., & Plioplys, S. (2001)Journal of Health Psychology, 6, 61-71.
"Participants prompted with the myalgic encephalopathy name
were more likely to attribute a biomedical cause to the illness,
and less likely to consider patients as candidates for organ
donation than those prompted with the CFS name."
Dr. Jason found in the early 1990s that previous epidemiological
studies derived their samples from physician referrals in hospital
and community-based clinics. These studies under-represented
low-income and under-served minorities, people who manifest higher
levels of chronic illness while also being less likely to have
access to the health care system — and who are thus less likely to
be counted in prevalence rates derived from treatment sources.
These studies also underestimated the prevalence of ME/CFS in the
general population because they depended on diagnoses by
healthcare providers who discounted the existence of the illness
and would thus fail to diagnose it.
In 1993, Jason and colleagues interviewed a random community-based
sample of approximately 1,000 adults.
Those individuals who self-reported having ME/CFS or many of the
symptoms of ME/CFS were examined by a physician and interviewed by
a psychiatrist in order to determine whether they met case
criteria for ME/CFS. The research team's diagnosis of .2% (200 per
100,000) was over ten times higher than the rate originally
reported by the CDC. In a larger study conducted from 1995 to
1998, Jason, Richman and colleagues screened a random
sample of 18,675 individuals for ME/CFS symptomatology.
Approximately .42% of the sample was determined to have CFS, with
rates being higher among Latino and African-American respondents
when compared to White respondents.
The results of this epidemiological study suggested that this
illness may affect approximately 800,000 people in the United
States. Women, Latinos, middle-aged individuals, and persons of
middle to lower socioeconomic status were found to be at higher
risk for this illness. The findings directly contradicted the
perception that middle to upper-class Caucasian women were the
primary individuals with this illness. Moreover, about 90% of
people identified as having ME/CFS in this sample had not been
previously diagnosed by a physician prior to participation in the
study, which highlights the limitations of prior ME/CFS
epidemiological studies based solely on samples recruited from
hospitals or primary care providers.
community-based study of chronic fatigue syndrome.
Jason, L.A., Richman, J.A., Rademaker, A.W., Jordan, K.M.,
Plioplys, A.V., Taylor, R., et al. (1999). Archives of Internal
Medicine. 159, 2129-2137. "The highest levels of CFS were
consistently found among women, minority groups, and persons with
lower levels of education and occupational status. Earlier
findings suggesting that CFS is a syndrome primarily affecting
white, middle-class patients were not supported by our findings."
Estimating rates of Chronic Fatigue Syndrome from a community
based sample: A pilot study. (Abstract)
Jason, L.A., Taylor, R.R., Wagner, L., Holden, J., Ferrari, J.R.,
Plioplys, A.V., Plioplys, S., Lipkin, D., & Papernik, M.
(1995). American Journal of Community
Psychology, 23, 557-568. "Different definitions of CFS were
employed, and higher rates (0.2%) of CFS were found than in
Case Definition Studies
Dr. Jason has been instrumental in refuting the unwarranted bias
against the organic nature of this serious disease, Myalgic
Encephalomyelitis/CFS. Considering the ineffectiveness of the
Fukuda 1994 Case Definition in clarifying the disease in a
clinical setting or identifying homogeneous patient cohorts for
research, other efforts by Dr. Jason have been directed towards
investigating the new Canadian
Case Definition of ME/CFS, helping develop and validate a
pediatric case definition, conceptualizing
subtypes, and exploring political issues related to this illness.
with the New CDC CFS Prevalence Estimates
Leonard Jason, Ph.D., DePaul University
Pediatric Case Definition for Myalgic Encephalomyelitis and
Chronic Fatigue Syndrome. (2006)
Journal of Chronic Fatigue Syndrome. Jason, L.A., Bell, D.S., Rowe, K., Van Hoof, E.L.S., Jordan, K.,
Lapp, C., Gurwitt, A., Miike, T., Torres-Harding, S., De Meirleir,
K. & IACFS
fatigue syndrome: The need for subtypes.
Jason, L.A., Corradi, K., Torres-Harding, S., Taylor, R.R., &
King, C. (2005). Neuropsychology Review, 15, 29-58. "The
current U.S. case definition for CFS (Fukuda et al., 1994) is
characterized by vaguely worded criteria that lack operations
definition and guidelines to assist health care professional in
their interpretation and application of the diagnostic too. (Jason
et al., 1999d). The Canadian case definition [includes]
these critical symptoms and use of such types of case definitions
might aid in the selection of more homogeneous samples. Based on
the research reviewed in this section, we would encourage
researchers to compare and contrast categories of patients meeting
the Canadian Case definition and the Fukuda et al. (1994)
criteria. In addition, the provision of standardized measures for
assessment and scoring guidelines should reduce clinicians’
difficulty with the criteria and their need to modify the criteria
in clinical practice. In effect, the use of standardized measures
should reduce criterion variance and improve diagnostic
reliability (King and Jason, 2004)."
(Abstract and summary only)
the Fukuda et al. criteria and the Canadian case definition for
chronic fatigue syndrome.
Jason, L.A., Torres-Harding, S.R., Jurgens, A., & Helgerson, J.
(2004). Journal of Chronic
Fatigue Syndrome, 12, 37-52. "...those individuals in
this study meeting the Canadian criteria appear to have more
symptoms, more physical functional impairment, and less
psychopathology than those in the CF-psychiatric group. In
addition, the Canadian criteria identifies patients with more
fatigue/weakness, neurological and neuropsychiatric symptoms than
the Fukuda CFS criteria does."
science, and the emergence of a new disease: The case of Chronic
Fatigue Syndrome. (Abstract)
Jason, L.A., Richman, J.A., Friedberg, F., Wagner, L., Taylor, R.,
& Jordan, K.M. (1997). American
Psychologist, 52, 973-983. "Many physicians minimized the
seriousness of this disorder and also interpreted the syndrome as
being equivalent to a psychiatric disorder. These attitudes had
negative consequences for the treatment of CFS. However, the
use of the revised CFS case definition might have produced
heterogeneous patient groups, possibly including some patients
with pure psychiatric disorders."
team did an analysis of the
Foundation's ME/CFS patient
Memorial List. This article presents their findings.
of Death among Patients with Chronic Fatigue Syndrome
Leonard A. Jason, Karina Corradi, Sara Gress, Sarah Williams
and Susan Torres-Harding DePaul University (2006). "The three
most prevalent causes of death were heart failure, suicide, and
cancer, which accounted for 59.6% of all deaths. The mean age of
those who died from cancer and suicide was 47.8 and 39.3 years,
respectively [and heart failure, 58.7], which is considerably
younger than those who died from cancer and suicide in the general
population. For each of these areas, there is supportive
evidence that might help explain why heart failure, cancer, and
suicide might be associated with deaths among people with CFS in
this sample. The implications of these findings are