By Marcia Harmon, CFIDS Association of America
Chronic fatigue syndrome (CFS) is a complex illness that has long been misunderstood by the public and by health care professionals. In an effort to change that, the Centers for Disease Control and Prevention (CDC) and the CFIDS Association of America are currently leading a national public health campaign to educate Americans about chronic fatigue syndrome.
“This is a disease that is very difficult to diagnose and very difficult to understand and treat,” says Julie Gerberding, MD, director of the CDC. “It has been shrouded in a lot of mystery and controversy. Our investment in this campaign is evidence that CDC sees a great need to provide accurate information to the public and health care professionals about this devastating illness.”
The emphasis on chronic fatigue syndrome has been spurred by several recent research findings:
- CFS is not a rare illness. At least one million Americans have CFS.
- Less than 20% of Americans with CFS have been diagnosed.
- Research shows that delays in diagnosis and treatment can lead to worse outcomes for patients.
- CFS has been found to be as debilitating as multiple sclerosis, lupus, end-stage renal disease and many other serious chronic illnesses.
- Researchers have uncovered many biologic abnormalities in CFS patients, producing a “critical mass” of studies that may finally end the debate about whether CFS is a biological or psychological illness.
The campaign is focusing on diagnosis and treatment of CFS, and people with symptoms of the illness are being encouraged to visit their health care professionals. Diagnosing CFS is a challenging process because there is no diagnostic test or biomarker to clearly identify the disorder. Diagnosis can also be complicated by the fact that the symptoms and severity of CFS vary considerably from patient to patient. However, there is a reliable diagnostic algorithm and a list of recommended laboratory screening tests available for medical professionals through the campaign.
“Getting correctly diagnosed with CFS is key to improving the lives of these Americans,” says Dr. Gerberding. The public and health care professionals are being encouraged to learn the symptoms of chronic fatigue syndrome.
CFS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina), sleep difficulties, and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms, pain in the joints and muscles, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is postexertional malaise, a worsening of symptoms following physical or mental exertion that can require an extended recovery time.
The most at-risk group for CFS appears to be women. Research has shown that CFS is about four times as common in women as men, a rate similar to that of many autoimmune diseases such as multiple sclerosis and lupus. However, CFS does not discriminate. It strikes people of all age, racial, ethnic and socioeconomic groups. Although few studies of CFS in children have been published, young people, especially adolescents, do get CFS.
Since no cause or cure for CFS have been identified, treatment programs are directed at relieving symptoms, with the goal of the patient regaining some level of pre-existing function and well-being. “There are effective treatment strategies clinicians can use to help CFS patients,” says Nancy Klimas, MD, of the University of Miami and Miami Veterans Administration Medical Center. “Although there’s no single treatment – no hoped for ‘magic bullet’ that fixes the illness at its core – there are treatment options that can improve symptoms, increase function and allow CFS patients to engage in activities of daily living. It’s critical for patients and their health care professionals to know that there is hope and there is help.”
Dr. Klimas, who has treated thousands of CFS patients in the past 20 years, says, “Current best practices for clinical care include a combination of symptom management, coping strategies, activity management and exercise therapies. Clinicians can help patients manage pain, sleep problems, cognitive difficulties, severe fatigue and other debilitating symptoms of this illness. We can help patients develop coping strategies that not only help them deal with the emotional aspects of having a chronic illness, but that also help them manage their symptoms better. And we can help patients learn to pace activities and redefine exercise in a way that allows them to function better without making their symptoms worse.”
The CDC has partnered with the CFIDS Association of America to develop easy-to-understand, downloadable educational tools for patients, their families and health care professionals. These materials are available at:
The campaign also features a traveling photo exhibit called “The Faces of Chronic Fatigue Syndrome” that is crisscrossing America. The exhibit features huge, compelling images and moving stories of patients with CFS and comments from health care professionals who treat this illness. Free brochures for visitors who want to know more about the symptoms and treatment options for CFS are available at the photo exhibit.
Next stops for the traveling CFS photo exhibit are:
- August 6-13 New York City Pennsylvania Station, Amtrak’s main concourse
- September 6-9 Sherman Oaks, California Fashion Square Sherman Oaks
- September 24-30 Dallas Public Library Dallas, Texas
