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November -
December 1999
No more "yuppie flu"
New study debunks CFIDS myths, reveals greater
prevalence
By Renee Brehio
In
the 1980s, chronic fatigue and immune dysfunction
syndrome (CFIDS) was portrayed as the "yuppie flu," a relatively rare condition that affected mostly upper
middle class white professionals. Now a group of researchers has shattered that image. A study published
in the October 11 issue of Archives of Internal Medicine reports that as many as 800,000 people
nationwide may suffer from CFIDS, twice the number previously estimated by the Centers for Disease Control
and Prevention (CDC). And the majority of sufferers are not "yuppies."
In fact, the highest levels
of CFIDS were consistently found among minority groups and individuals with lower levels of education
and occupational status, such as blue-collar workers. Unfortunately, these populations are also the least
likely to have access to medical care.
"For years, CFIDS has been marginalized and misunderstood,"
says Kim Kenney, CFIDS Association Executive Director. "This crucial piece of research will help change
the misperceptions about the illness and send a wake-up call to the medical and research community that
it is a public health problem that needs to be addressed."
Rigorous
methodology
Working under a grant from the National
Institutes of Health (NIH), researchers from DePaul University, University of
Illinois at Chicago, Northwestern University Medical School, Michael Reese
Hospital and Medical Center and Northern Illinois University conducted telephone
screenings with a random sample of 28,673 adults in eight communities in
Chicago. This was the first major CFIDS prevalence study to draw its
participants from an ethnically and socioeconomically diverse inner city area.
 Those individuals who indicated during the screening that they suffered from unexplained, persistent
or relapsing chronic fatigue for at least six months and had symptoms consistent with the CDC's criteria
for CFIDS, without another possible medical explanation, were classified as having a chronic fatigue-like
illness.
This group then participated in the second phase of the study, in which they were medically
evaluated. Self-report questionnaires, complete medical examinations with laboratory testing and psychiatric
evaluations were used to rule out other conditions. A team of four physicians and a psychiatrist made
the final diagnoses.
Startling results
What
the researchers found was a very different picture of CFIDS than that presented by previous studies. One
reason may be that by targeting a diverse urban area, they uncovered a hidden population of sufferers.
The CDC, which conducted its studies mostly in upper-middle class, white communities, previously estimated
238 adults per 100,000 in the United States have CFIDS; the Chicago study puts the number at 422 out of
every 100,000, nearly double CDC's rate.
"Previous studies that relied on referrals from physicians
and medical clinics have underestimated prevalence because many low-income individuals lack access to
the health care system and therefore didn't show up in the numbers," says Dr. Leonard Jason, the DePaul
University psychology professor who led the research team. "And many patients with fatigue drop out of
the system, so it is difficult to get an accurate number by only sampling those in treatment."
Study
authors speculate that relying on referrals and sampling mostly white, middle-to-upper class communities,
as the CDC's initial studies did, also resulted in the labeling of CFIDS as a "yuppie" disease as they
do not account for ethnic minorities and the medically underserved.
What is clear is that
most of the CFIDS prevalence studies
to date are problematic and do not present a complete picture of the illness.
Examining the DePaul findings reveals some startling new pieces of information
in addition to confirming some previously unsubstantiated beliefs.
 Low rate of diagnosis. The researchers found that less than 10% of
individuals
with CFIDS had been diagnosed, which is lower than the CDC's estimate of 16%. This indicates that most
individuals who have CFIDS are not receiving treatment, perhaps because they are not financially able
or aware that they should do so. "Many are probably coping with their symptoms without having any idea
that they might have a medical condition," says Dr. Jason, "which argues for more education about the
illness, both among physicians and the general public."
Racial differences. In the
community-based study, Latinos demonstrated the highest prevalence of CFIDS at 726 cases per 100,000-twice
that of whites, at 310 per 100,000. African Americans, also previously considered to be far less afflicted
than whites, had a prevalence rate of 337 per 100,000. The study authors speculate that elevated rates
of CFIDS in Latinos and African Americans may be attributable to poor or deteriorating health status among
underserved ethnic groups. Factors contributing to poorer health status may include psychological and
social stress, behavioral risk factors, poor nutrition, inadequate health care, more hazardous occupations
and environmental exposures.
High rate in women. The relationship of gender to CFIDS
has raised some controversy in the past. This study confirmed that women have a much higher rate of the
illness than men, with 522 women afflicted per 100,000, compared to 291 men per 100,000. CFIDS is 15 times
more prevalent in women than lung cancer (33/100,000) or breast cancer (26/100,000) and more than 40 times
as common in women as AIDS (12/100,000). These numbers should classify CFIDS as a major women's health
issue.
Baby boomers at risk. Individuals in the 40-49 year-old age range exhibited the
highest rates of CFIDS (see box at left), which belies the common perception that it is mostly younger
professionals (especially women of childbearing age) who "burn out" and develop CFIDS. Interestingly,
prevalence rates are as high for individuals who are 50-59 as for those in the 30-39 year-old range.
Class
isn't a large factor. With respect to social and educational status, many previous studies described
individuals with CFIDS as well-educated, with middle or upper incomes and professional occupations. In
contrast, the study found that prevalence was highest among skilled workers (craftsmen, clerical and sales
workers), second highest among unskilled laborers, machine operators and semiskilled workers and lowest
among professionals.
It's not all in your head. In addition to medical examinations, study
participants were screened for psychiatric symptoms. A significant subgroup had never experienced a psychiatric
illness, and almost 60% had never experienced a psychiatric illness such as depression before the onset
of their CFIDS. These statistics help strengthen the argument that CFIDS cannot be entirely attributable
to psychological factors.
Creating greater awareness
These
findings provide us with
ammunition to change the image of CFIDS in the minds of legislators, researchers, the medical
community and the general public and help get the illness recognized as a priority for redoubled
research and education efforts by government and academic institutions.
In
addition to its advocacy efforts, The CFIDS Association of America is using the study as a springboard
to launch a media relations effort to change perceptions. Reporters at top newspapers, women's magazines,
television and radio stations are being called to inform them about the study and educate them about the
illness.
You can obtain a copy of the study by visiting the Archives of Internal Medicine's
web site at www.archinternmed.com or by contacting the Association for a reprint. See the Educational
Materials
section on page 39 to order.
Renee Brehio
is Director of Communications and editor of
The CFIDS Chronicle.
Interview
with the lead author
Dr. Leonard Jason, who led the
study team, has served in the
psychology department at DePaul University since 1975. He is the author of 12 books and more than 300
scholarly articles on smoking prevention, community building, substance abuse, and CFS. He recently talked
to The CFIDS Chronicle about what he hopes this research will mean for persons with CFIDS (PWCs).
Chronicle:
Why is this study different
from what has been done in the past?
Dr. Leonard Jason (LJ): This is the first
study that has included a random sample from an ethnically and socioeconomically diverse community, telephone
screening and full medical and psychiatric workups to confirm diagnosis. We did preliminary work under
a grant from The CFIDS Associ-ation in 1992, which gave us a chance to hone our research methods to get
the best, most accurate results. Based on our research, the CDC has now recommended using community-based
samples, which is an encouraging sign that we’ve had a broader influence on how CFIDS prevalence data
is collected.
What do you think is the most
compelling piece of the study?
LJ:
The overall prevalence figure is particularly striking. It’s hard to ignore more than 800,000 people.
We’ve identified there are hundreds of thousands of incredibly ill PWCs out there, many of whom don’t
have access to the health care system. More than 90% of the individuals we identified as having CFIDS
were previously undiagnosed.
Have you looked at pediatric
prevalence?
LJ:
As part of this study, we screened children and adolescents using the same methods. A manuscript is being
written for the pediatric data and will be submitted for publication as well.
What do you hope that this
study will do for PWCs?
LJ:
The optimal situation would be for the data to influence federal funding decisions, because current government
funding for CFS research is about $12 million a year, or only $15.00 per patient. That is a very small
sum, given the amount of money devoted to less prevalent illnesses. Our study will make it harder to trivialize
CFIDS.
Now that
you have established how prevalent this illness
is, what do you see as your next step?
LJ: I’m working on getting a grant for
a service delivery program for PWCs. We need state, federal and local funding for initiatives to help
those individuals--everything from housing to financial assistance. Research on finding a cure is incredibly
necessary, but we can’t forget about the daily struggles of those who are ill, don’t know where to turn
and are desperately seeking assistance. I’ve created a model program that is posted on my web site,
which includes a prototype for a "comprehensive care center" for PWCs whose needs exceed what their family
caregivers can provide.
(For more information on Dr. Jason's current work,
see his web
site at http://condor.depaul.edu/~ljason/.)
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