New Study Debunks CFIDS Myths, Reveals Greater Prevalence
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.”
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 of28,673 adults in eight communities in Chicago. This was the first major CFIDS prevalence study to draw its participants from an ethnically and socio-economically 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.
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 per100,000 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 con- firming 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 with- out 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.”
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 per100,000. 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 522women afflicted per 100,000, com-pared 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, which belies the common perception that it is mostly younger professionals (especially women of childbearing age) who “bum 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 at 1-800-44-CFIDS.
Source: The CFIDS Chronicle, November/December 1999. This article was reprinted with permission from the CFIDS Association of America.