Patients: Frequently Asked Questions
Q. What causes CFS?
A. No single cause of the illness has been determined. Current research indicates that there are likely
multiple triggers resulting in the same set of symptoms. Many people report that their symptoms began following a flu-like illness; others people report that the disorder began spontaneously and symptoms became gradually worse. Physical trauma, genetics, immunological conditions, and possibly severe emotional distress appear to be related to some cases.
Q. Is there a diagnostic test for CFS?
A. No, there is no blood, urine, or imaging test to diagnose CFS. The keys to diagnosis are identifying a characteristic pattern of symptoms and excluding other possible causes.
Q. Is there a cure for CFS?
A. No, there is no curative treatment for the illness. However, there is a range of symptomatic and
supportive therapies that are helpful. With good medical care, improvements in symptoms, function and quality of life are possible.
Q. What are the symptoms of CFS?
A. According to the 1994 International Case Definition the symptoms include: fatigue lasting for six months or longer that significantly affects lifestyle; in addition, four or more of the following symptoms must be present [along with the debilitating fatigue]:
- Post-exertional malaise (lasting more than 24 hours)
- Sleep difficulties / unrefreshing sleep
- Impaired memory or concentration
- Muscle pain
- Multi-joint pain
- Headaches of new type, pattern, or severity
- Sore throat
- Tender lymph nodes in the armpit and neck
Q. How do I get a diagnosis?
A. Although it was developed as a research case definition, the 1994 International Case Definition is the prevailing document used for diagnosis. Diagnosis of chronic fatigue (CFS), is a time-consuming and difficult process which is generally arrived at by
excluding other illnesses with similar symptoms and comparing a patient's symptoms with the case definition. As yet, there is no indicator or diagnostic test that can clearly identify the disorder.
If you are typical of the person with CFS, obtaining a diagnosis has been a frustrating experience. You are not alone in your frustration. Support, information and understanding are offered
through the CFIDS Association. Visit the links at the bottom of this page to learn more.
Additionally, a "Do I Have CFS?" questionnaire, designed to help users determine if they might have CFS is available on this website. It is our
hope that this brief questionnaire will help prompt an informed conversation with your health care provider.
Q. How do I find a doctor who is knowledgeable about CFS?
A. Start by reading the CFIDS Association of America's brochure, "Choosing a Health Care Provider." A reliable source of referral often comes from area support groups where people share information about their experiences as well as health care providers who are CFS-knowledgeable. Support group listings are also available from the U.S. Centers for Disease Control and Prevention.
Q. Is CFS a psychological disorder?
A. No. All chronic illnesses have significant medical, psychological and social components. CFS is not simply a form of depression or anxiety, although these may result from having a chronic, debilitating illness. CFS and depression share a few similar symptoms, which may be one reason for misdiagnosis. However, the physical symptoms of CFS differ greatly than those of depression and can help to differentiate between the two illnesses.
Q. How many people have CFS and who gets it?
A. Current community-based surveys estimate that over 800,000 U.S. adults have the illness, yet, only about
10% - 20% have been diagnosed. CFS affects men, women and children from all age, ethnic and socioeconomic groups. Studies have shown the highest rates of the illness are in Latinos and African Americans, followed by Caucasians and Asians.
Q. Will exercise, bed rest, or diet changes help?
A. There are treatments that can help ease symptoms. These include various medications that are given to help with specific symptoms, such as sleep disturbances or pain; and alternative/complementary therapies such as massage, yoga or Tai Chi. For more, click the treatment link at the bottom of this page.
- Excessive activity may aggravate CFS symptoms, however, a regular, gentle exercise program that is specifically designed for the ill person can be beneficial. PWCs have
varying degrees of activity tolerance and must carefully balance activity and rest.
- Bedrest is not an option for some PWCs. Those with severe symptoms may be bedridden, while others have varying degrees of activity tolerance. Deconditioning is a problem that can easily affect a person who is bedridden or has limited amounts of daily physical activity. A rehabilitation professional familiar with the
energy management problems of people with CFS (PWCs) can help design a highly individualized activity regimen to optimize health and well-being for PWCs.
- Because many persons with CFS have digestive problems (nausea, pain, irritable bowel syndrome), maintaining adequate nourishment can be a challenge. Many fad diets call for an imbalanced food intake,
can create poor nutritional status and should be avoided. Food intolerances are also a problem for a significant number of people with CFS. Speak with your primary care provider and/or a registered dietitian regarding your nutritional concerns.
Q. How long will it take to recover?
A. It is not possible to predict recovery. About one-third of persons with CFS recover almost fully, but no one knows why. Some people recover in small to moderate degrees, while others recover minimally, if at all. Still others have progressively worse symptoms over time. Very little data exists about recovery rates for CFS; what we
do know is that, statistically, it appears that the best chance of recovery occurs in the first five years of the illness. No treatments or physical characteristics or people with the illness have been associated with recovery and, at this time, there are no reliable predictors of how long the illness may last. According to one current research study, it appears that early diagnosis and adequate treatment may alter the course of CFS.
Q. Should people with CFS donate blood?
A. Donating blood may not be safe for persons with CFS (PWCs), as research has shown that many PWCs have low blood volume and other vascular problems, and removing additional blood could provoke a relapse. Additionally, CFS patients should refrain from donating blood, bone marrow or organs, as it is currently unknown whether or not the illness may be contracted in this manner.
Q. Can people with CFS continue working?
A. It is possible, but is highly individualized and dependent on symptom severity and the demands of a
given job. PWCs experience a wide spectrum of disability ranging from people who can work a few part-time
hours to those who are unable to work at all. PWCs whose symptoms are mild may be able to work full time. Community-based studies report that approximately 53% of persons with CFS continue to work. Whenever possible, people should be encouraged to continue working because of its benefits to self-esteem and economic security.
Decisions about changing employment status need to be considered carefully, obtaining as much information
as possible regarding continuation of insurance and disability benefits. Occupational therapists may be helpful by
providing tips on energy conservation, joint protection and other functional techniques.
Q. Are people with CFS eligible for Social Security and long-term disability benefits?
A. Yes. Like any other medically certified illness, sickness benefits or disability allowances are an important part of ensuring financial stability for people who are disabled by CFS. For more information about disability benefits, click the legal issues link below.
Q. I get very discouraged at times when I look back at the changes in my life since CFS. What can I do?
A. These feelings are a common part of coping with a chronic illness. Talk with your primary care provider and/or find a therapist, minister or support group with whom you can voice your feelings. Cognitive behavioral therapy
is a method that has been used with some success to help persons with CFS cope with the psychological aspects of having this illness. Although periods of sadness that last a day or two are normal, extended periods of feeling sad, hopeless and "down" are troublesome; it's crucial to seek medical help during these times because co-existing depression with CFS can affect other symptoms and general well-being.
Q. What is being done about CFS?
A. Federal agencies, such as National Institutes of Health and the U.S. Centers for Disease Control and
Prevention, along with organizations like the CFIDS Association of America, encourage and support CFS research and education. The Associationís CFS awareness, education, public policy and research programs have been effective in
focusing federal attention on CFS-related issues, engaging the scientific community in the study of CFS and improving public awareness of the illness. Learn more about the Association-led efforts on behalf of the CFS community.
Q. What can I do to help?
A. Depending on the severity of your symptoms, you may consider becoming a participant in a research study or wish to help educate others about the illness. Starting a support group in your area if one does not exist, or becoming an active part of an existing support group are other ways to help. You may be able to use your computer, telephone or writing skills to communicate with others about the illness. In April 2004, the Association launched a new online tool that makes participating in grassroots advocacy, and reaching lawmakers, public health officials and the media with timely information about CFS, easier than ever. Visit the Grassroots Action Center to get started. You may also wish to join the CFS Association and/or make a financial donation to
support our efforts aimed at ending the pain and disability CFS causes.
Q. What is the CFIDS Association of America?
A. The CFIDS Association of America was founded in 1987 by a small group of individuals intent on fighting back against the disease that had stolen so much of their lives. The first dollar spent by the organization was directed to medical research. Since that time, the Association has grown to become the nation’s largest and most active charitable organization dedicated to conquering CFS and has invested over $27 million dollars in this important mission.
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