October 1998 CFIDS Press Releases

Thanks to:   Vicki Walker
The CFIDS Association of America, Inc.
E-mail: vwalker@cfids.org Fax: 704/365-9755

Chronic fatigue syndrome common in US

NEW YORK, Oct 15 (Reuters) - Chronic fatigue syndrome is a serious public health concern, affecting about 500,000 Americans, according to a new survey by researchers at the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia. The study shows that the disorder occurs in both sexes and all racial and ethnic groups, but is most common in Caucasian women. The rate of chronic fatigue syndrome is '25 times the rate of AIDS among women... and is considerably higher than female lung cancer... breast cancer...and hypertension,' said Dr. William C. Reeves, lead author of the study and director of the Viral Exanthems and Herpesvirus Branch of the CDC's National Center for Infectious Disease.

Symptoms of chronic fatigue syndrome (CFS) include debilitating fatigue, memory and concentration difficulties, sore throat, tender lymph nodes, muscle and joint pain, recurrent headaches, sleep disorders, and fatigue lasting more than 24 hours after exertion. Symptoms must persist for 6 months and there must be no other medical explanation for the symptoms in order for physicians to diagnose CFS.

The cause of the syndrome has yet to be determined. While some believe the ailment has a physical basis, others speculate that psychological problems may trigger the disorder.

To determine the prevalence of CFS, Reeves and his colleagues at the CDC conducted a telephone poll involving residents of over 34,000 households in Sedgwick County, Kansas. Respondents were asked to answer a series of detailed questions about their personal medical histories.

Based on the survey results, the authors estimate that about 183 of every 100,000 adult US citizens has a constellation of symptoms fitting the definition of CFS.

The CFS incidence among women is 303/100,000, the researchers report. They found that disease rates were highest of all among white women, at 458/100,000.

Reeves believes that these rates are comparatively high in relation to the incidence of other diseases in the population. For example, he noted that 'three times more women have CFS than HIV infection.'

'This study indicates that CFS affects women and men of all racial and ethnic groups, as well as adolescents,' Reeves said. 'However, white women have the greatest risk for disease and this must be taken into account in planning allocation of health resources and searching for risk factors.'

There are currently no effective treatments for CFS, although one drug, Ampligen, is under review by the US Food and Drug Administration.

For more information about the illness, the advocacy group Chronic Fatigue and Immune Dysfunction Syndrome Association of America can be accessed at www.cfids.org.
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(c) 1998 Reuters Limited

CFS Far More Common than AIDS, Breast Cancer or Lung Cancer

Cambridge, Mass., October 10, 1998 — In a study to be released today, U.S. Centers for Disease Control and Prevention (CDC) researchers have found that chronic fatigue syndrome (CFS)[1] is a far greater public health problem than previously known.

This study, the most extensive of its kind, estimated the overall prevalence of CFS at 183 cases per 100,000 in persons ages 18-69. As in other studies, the highest rates of CFS were found among Caucasian women, in which the prevalence nearly doubled to 340 per 100,000. In women overall, the prevalence was 303 per 100,000; in men overall, 53 per 100,000. Dr. William C. Reeves, chief of the CDC branch responsible for the study, stated, "This study indicates that CFS affects women and men of all racial and ethnic groups, as well as adolescents. However, white women have the greatest risk for disease and this must be taken into account in planning allocation of health resources and searching for risk factors."

By examining the prevalence of other common women's diseases, the CDC researchers concluded that CFS is a serious women's public health concern.

This study was unique in that nearly 25% of the population of Sedgwick County, Kan. was surveyed and full medical evaluations were performed on those who reported the symptoms of CFS by telephone interview. Sedgwick County (Wichita) was chosen because of its demographic similarity to the U.S. as a whole. Few of the patients identified as having CFS carried that diagnosis already and most were not under the care of a physician. This finding helps explain the differences between the rates of CFS reported in this study and earlier CDC estimates that resulted from surveying physicians about the number of CFS patients in their practices.

The current CFS definition[2] requires that all other possible causes of the symptoms are excluded before the diagnosis is made. All persons who met the case definition for CFS, but also had any lifetime history of melancholic depression were excluded — even if that depression occurred years before the onset of CFS or resulted from the stresses of having a chronic, often disabling illness. When persons with melancholic depression and CFS were included in the numbers, the rates jumped to 248 per 100,000 overall; 404 per 100,000 in women of all races; and 458 per 100,000 in white women. According to Dr. Reeves, "We're looking at the exclusion for melancholic depression much more closely now. Further understanding of these data will allow us to make recommendations about future case definitions."

Data from this study were presented Oct. 10 at The American Association for Chronic Fatigue Syndrome international research conference and again Oct. 13 at The U.S. Department of Health and Human Services Chronic Fatigue Syndrome Coordinating Committee meeting. Both meetings were held in Cambridge, Massachusetts.

Symptoms of CFS include debilitating fatigue, impairment of short-term memory or concentration, sore throat, tender lymph nodes, muscle and joint pain, headaches, unrefreshing sleep, and fatigue lasting more than 24 hours following exertion. To be diagnosed with CFS, a person must have had these symptoms for more than six months and cannot have any other medical explanation for them. Many CFS patients are unable to continue holding jobs, attending school or caring for family members because of the disease.

Please see CFS Fact Sheet below for more information about CFS.

Please see "Executive Summary" below for more information about the CDC study.

[1] CFS is also known as chronic fatigue and immune dysfunction syndrome (CFIDS) and myalgic encephalomyelitis (M.E.)
[2] Fukuda K, et al: "CFS: A Comprehensive Approach to its Definition and Study," Annals of Internal Medicine, 12/15/94.

Editor's Note: For public inquiries about CFS, please provide 800-442-3437 or www.cfids.org as a source of free information, 24 hours a day.


Executive Summary
October 10, 1998
Random-Digit-Dialing Survey of Fatiguing Illness in Sedgwick County, KS (Wichita)

U.S. Centers for Disease Control and Prevention, National Center for Infectious Diseases, Division of Viral and Rickettsial Diseases, Viral Exanthems and Herpesvirus Branch
Michele Reyes, Rosane Nisenbaum, David Hoaglin, William C. Reeves
Primary purpose of study: To determine the prevalence of chronic fatigue syndrome (CFS) and fatiguing illness in Wichita, KS.

Secondary purposes:
1) To determine the prevalence of prolonged fatigue (>1 month) (PF), chronic fatigue (> 6 months)(CF), and chronic fatigue syndrome (CFS) and 2) to compare these CFS prevalence estimates with other studies, specifically the CDC 4-City Physician-Based Surveillance (1989 - 1993) where Wichita was one of the study sites. In this latter study, the overall prevalence of CFS was 6.4/100,000 and was highest in white-women, 10.8/100,000.

Methods: This study was a population-based, cross-sectional, random-digit-dialing survey of residents in Sedgwick County (Wichita). The study was conducted in 3 phases:
1. Screener interview of households
2. Detailed telephone interview of all individuals with fatigue > 1 month and a number of non fatigued persons.
3. Clinical evaluation of persons with CFS-like illness to determine CFS classification.

Results: We contacted 34,018 households representing 90,319 residents with phones (about ¼ of the Wichita population) and 56,154 persons aged 18-69 years old.

      Overall prevalence estimates per 100,000 persons 18-69 years old:
Prolonged fatigue      10,835
Chronic fatigue      8,254
CFS-like      1,609
CFS      183

      Prevalence estimates in women per 100,000:
Prolonged fatigue      13,747
Chronic fatigue      10,570
CFS-like      2,206
CFS      303

CFS prevalence highest in white women 340/100,000.

* * * * *

CFS Fact Sheet

PREVALENCE:

  •   CDC studies have estimated that CFS affects approximately 183 per 100,000 U.S. persons. This translates into approximately 500,000 persons with CFS in the U.S.
  •   Few studies of CFS in children and adolescents have been published. It is well-accepted that adolescents get CFS, although less frequently than adults.
  •   CFS has been shown to affect persons of all races, ages and socioeconomic groups.

    SYMPTOMS:

  •   Fatigue, substantial impairment of short-term memory or concentration, sore throat, tender lymph nodes, muscle and joint pain, headaches, unrefreshing sleep, and fatigue lasting more than 24 hours following exertion.
  •   CFS is diagnosed when these symptoms persist for more than six months and cannot be explained by any other medical condition.
  • Veterans of the Persian Gulf war have a symptom complex which has been determined by scientists to be virtually identical to CFS.

    RECOVERY RATES:

  •   The clinical course of CFS varies widely. Some patients recover to the point that they can resume work and other activities, even though they continue to experience symptoms.
  •   In one study, 45% of CFS patients reported that they had significantly improved, most often during the first five years of illness.

    TREATMENT:

  •   Treatment of CFS is aimed at symptom relief. No single therapy exists to help all patients with CFS.
  •   Only one drug, Ampligen, is nearing the end of the FDA's approval process. Currently, 20 patients are receiving the drug by paying for it themselves under a special FDA program. It costs as much as $25,000 per year. An FDA-required randomized study of the drug is expected to begin soon.

    THE CAUSE:

  •   Despite an intensive decade-long search, the cause of CFS remains unknown. Many different viruses, bacterium, toxins and psychological causes have been considered and rejected.
  •   Genetic and environmental factors may play a role in developing and/or prolonging the illness, although increased research is needed.

    THE NAME:

  •   The name "chronic fatigue syndrome" was coined in 1988 by a group of scientists.
  •   The name chronic fatigue syndrome is believed by most patients and researchers to be inadequate, as it focuses too heavily on only one easily misunderstood symptom of the illness. Thirty years ago or more, multiple sclerosis patients were subject to this type of stigma -- people then called MS "hysterical paralysis."
  •   CFS is also known as chronic fatigue and immune dysfunction syndrome (CFIDS), myalgic encephalomyelitis (M.E.) and many other names.

    THE GOVERNMENT'S RESPONSE TO CFS:

  •   Ever since CFS was recognized as a public health concern in the mid-1980s, Congress has urged federal health agencies to allocate increasing resources to the investigation of CFS. Although the true amount of spending is in question, the major public health agencies have reported to Congress a 400% increase in CFS spending over the last six years.

    ABOUT OUR ORGANIZATION:

  •   The CFIDS Association of America is the leading organization dedicated to conquering CFIDS and related disorders. Free information about CFIDS can be obtained by calling 800/442-3437 (24 hours a day).
  •   Since 1987, The CFIDS Association has invested over $3.3 million in CFIDS research.
  •   The Association's inquiries into federal CFS spending began in 1992.

    The CFIDS Association of America, Inc.
    Advocacy, Information, Research and Encouragement for the CFIDS Community
    PO Box 220398, Charlotte NC 28222-0398
    Voice Mail: 800/442-3437    Fax: 704/365-9755
    WWW: http://www.cfids.org    General E-mail: cfids@cfids.org

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