What is it?

Overview

What Is It?
Chronic fatigue syndrome is an illness characterized by prolonged, debilitating fatigue severe enough to affect one or more aspects of a person's life. It is also characterized by multiple nonspecific symptoms such as headaches, recurrent sore throats, muscle and joint pains, memory and concentration difficulties.

Chronic fatigue syndrome (CFS) is an illness characterized by prolonged, debilitating fatigue that does not improve with rest and worsens with physical or mental activity. It is also characterized by multiple nonspecific symptoms such as headaches, recurrent sore throats, muscle and joint pains, memory and concentration difficulties.

Profound fatigue, the hallmark of the disorder, can come on suddenly or gradually and persists or recurs throughout the period of illness. Unlike the short-term disability of an illness such as the flu, by definition CFS symptoms must have persisted for at least six months and often linger for years. The cause of CFS remains unknown.

The U.S. Centers for Disease Control and Prevention (CDC) estimates that CFS affects women at four times the rate that it affects men and that the illness is diagnosed more often in people in their 40s and 50s. Chronic fatigue syndrome can affect any sex, race or socioeconomic class. And although CFS is less common in children than in adults, children can develop the illness, particularly during the teen years. It can be as disabling as multiple sclerosis and chronic obstructive pulmonary disease.

The prevalence of CFS is difficult to measure because the illness can be difficult to diagnose, but, in general, it is estimated that about one to four million people in the United States have CFS , according to the CDC. People with CFS are seriously impaired; at least a quarter are unemployed or on disability because of their illness, yet only about half have seen a physician about the condition.

Chronic fatigue syndrome does not appear to be a new illness, although it has only recently been assigned its name. Relatively small outbreaks of similar disorders have been described in medical literature since the 1930s. Furthermore, case reports of comparable illnesses date back several centuries.

Interest in what now is called CFS was renewed in the mid-1980s after several studies found slightly higher levels of antibodies to the Epstein-Barr virus (EBV) in people with CFS-like symptoms than in healthy individuals. Most of these people had experienced an episode of infectious mononucleosis (sometimes called mono or the "kissing disease") a few years before they began to experience the chronic, incapacitating symptoms of CFS. As a result, for a time, the CFS-like illness became popularly termed "chronic EBV."

Further investigation revealed that elevated EBV antibodies were not indicative of CFS, since healthy people can have high EBV antibodies and some people with CFS don't have elevated levels.

The illness was named chronic fatigue syndrome because the name reflects the most common symptom: long-term, persistent fatigue.

Today, CFS also is known as myalgic encephalomyelitis (ME), postviral fatigue syndrome, and chronic fatigue and immune dysfunction syndrome (CFIDS). It is important to note, however, that the word "fatigue" is extremely misleading. Fatigue is but one symptom among many that make up this illness, and it doesn't reflect the significance of other disabling symptoms. The word also adds to generalized misunderstanding and trivialization of the illness.

There are no indications that CFS is contagious or that it can be transmitted through intimate or casual contact. Research continues to determine the safety of blood donation by people with CFS.

CFS either begins abruptly or may - come on gradually. The sudden onset frequently follows a respiratory, gastrointestinal or other acute infection, including mononucleosis. Other cases develop after emotional or physical traumas such as serious accidents, bereavement or surgery.

Although CFS can persist for many years, long-term studies indicate that CFS generally is not a progressive illness. Symptoms are usually most severe in the first year or two. Thereafter, the symptoms typically stabilize, then persist chronically, wax and wane, or improve. For some people with CFS , however, symptoms can get worse over time.

It appears that while the majority of people with CFS partially recover, only a few fully recover, while others experience a cycle of recovery and relapse. There's no way to predict which category you might fall into. There is some evidence that the sooner a person is treated, the better his or her chances of improvement, which illustrates the importance of early diagnosis and treatment.

Diagnosis

Diagnosis

Chronic fatigue syndrome (CFS) is diagnosed by excluding known medical and psychiatric illnesses that also exhibit fatigue and similar symptoms. It is important to diagnose these conditions because treatments may be available. Diseases that also have fatigue include:

• hypothyroidism

• sleep apnea

• narcolepsy

• alcohol or substance abuse

• severe obesity

• lupus

• multiple sclerosis

• cancer

• depression

• anorexia nervosa

• bulimia nervosa

• schizophrenia

• bipolar disorder

• dementia

Thus, the diagnosis of CFS is one of exclusion—excluding other possible causes of the symptoms. Some diseases eliminate a diagnosis of CFS, such as multiple sclerosis, lupus or a severe psychiatric disorder such as schizophrenia. It would not provide any benefits in these cases to have a second diagnosis.

The current diagnostic criteria for CFS specify unexplained, persistent fatigue that's not due to ongoing exertion, isn't substantially relieved by rest, started recently and leads to significant reduction in previous activity levels. They also require the presence of at least four of the following symptoms:

• unrefreshing sleep

• impairment in short-term memory or concentration

• post-exertional malaise occurring within 12 to 24 hours of exertion and lasting 24 hours or more

• joint pain without joint swelling or redness

• muscle discomfort or pain

• headaches of a new type or severity

• recurrent sore throat

• tender lymph nodes in the neck and underarms

Multiple subjective symptoms are also reported, and although these are not included in the current diagnostic criteria, they are reported with relative frequency. These include:

• irritable bowel syndrome and other gastrointestinal complaints
• allergy-like symptoms
• skin rashes
• visual disturbances
• dizziness
• numbness and tingling in arms and legs
• sensitivities to various chemicals
• dry eyes
• chills
• night sweats
• alcohol and medication intolerances

Some CFS patients also report mild to moderate symptoms of anxiety or depression. However, many people with CFS don't have depression or any other psychiatric illness. Depression may be a secondary effect of CFS, not necessarily a primary condition, as people attempt to cope with the changes in lifestyle that living with a chronic illness dictates.

Whether anxiety or depression occurs before or during the illness is not the significant factor; getting help for these distressing conditions is what is essential.

Allergies also tend to be more common in CFS patients than in the general population. Many CFS patients have a history of allergies years before the onset of the syndrome. Sometimes patients report a worsening of allergic symptoms or the onset of new allergies after becoming ill with CFS. Because allergies are so common in people with CFS, it is important to identify symptoms caused by allergies so they can be treated independently.

Your health care professional should take a thorough medical history and conduct extensive physical and mental status examinations, including laboratory tests.

Treatment

Treatment

A variety of therapies have been shown to help patients with chronic fatigue syndrome (CFS). Treatment is based on individual symptoms. If you're diagnosed with CFS, you'll probably manage the condition with the following:

• Symptom-based treatment.

• Education about the disease.

• Regular follow-up visits to rule out alternative diagnoses and assess response to therapy.

• Lifestyle changes. While lifestyle changes cannot cure the symptoms of CFS, they can make life with CFS more manageable and enjoyable. Increased rest, the use of stress reduction and management techniques, energy conservation techniques, dietary restrictions, nutritional supplementation and exercise based on personal abilities may be recommended by your health care professional.

• Exercise. Exercise that starts slowly and gradually becomes more challenging has been shown to help improve symptoms of CFS. You can start a graduated exercise program with the help of a physical therapist.

• Cognitive behavior therapy. Often used together with graduated exercise, cognitive behavior therapy helps people with CFS identify negative beliefs and behaviors that may be getting in the way of their recovery. It has been shown to help reduce symptoms of CFS. With the help of a mental health provider, cognitive behavior therapy helps you replace negative thoughts with positive, healthy ones.

• Medication. Certain over-the-counter or prescription medications may help you manage your symptoms. Specifically:

  • For aches and pains, over-the-counter medicines and prescription treatments including nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen (Motrin), naproxen (Aleve), acetaminophen (Tylenol) and the prescription drug piroxicam (Feldene) may help. Deep massage, stretching, an activity program that has been designed with the help of a physical therapist or chiropractic treatment may also help minimize these symptoms.

  • For sleep problems that accompany CFS, your health care professional may first suggest you change your sleep habits and stick to a regular bedtime, skip daytime naps and avoid substances like alcohol and caffeine. If this doesn't help, he or she may prescribe a short-term dose of sleep medication.

  • For depression, antidepressants are often used. It often takes several weeks to see benefits with antidepressants or to identify side effects, so be patient and work with your health care professional to find the medication that is best for you.

You may also benefit from keeping an energy/activity diary. Keep a log for several weeks, noting the times when you feel the most fatigued and what activities you performed during the day. This can help you identify patterns in your illness and factors that contribute to your fatigue or other symptoms, such as headaches.

Also schedule rest periods and adjust your schedule to fit your energy patterns. Making time to relax and meditate during certain times of the day may be helpful, as will avoiding situations you know to be physically or psychologically stressful.

Work with your health care professional to develop a highly individualized activity plan based on your personal capabilities. Some CFS sufferers experience profound fatigue even after very minimal exercise, so start off slowly and build up gradually. Many people find exercise such as stretching, walking, swimming, biking, water aerobics and relaxation exercises to be helpful in easing their symptoms. A physical therapist may help you put together an exercise program you can do at home.

Diet may also be an effective way to take control of your illness. Research suggests that CFS patients benefit from a basic healthy diet low in animal fat and high in fiber with plenty of fresh fruits and vegetables. Talk with your health care professional about foods that may help increase your energy levels and relieve symptoms. If you lack the stamina to prepare well-balanced meals, let your health care provider know. Services may be available to assist with obtaining meals. A visit with a dietitian may be needed if you've lost or gained weight or been unable to eat a balanced diet.

You should also avoid certain triggers that aggravate CFS symptoms, such as a chemical, pesticide, household cleaning product, or another potential environmental toxin. To identify your triggers, remove all suspected toxins from your environment, then reintroduce them one by one to pinpoint what may be aggravating your symptoms.

Prevention

Prevention

Despite a decade of research into the origins of chronic fatigue syndrome (CFS), researchers still don't know what causes this debilitating disease. Neither are there known steps you can take to prevent CFS. However, research into the cause, control and prevention of CFS is being conducted.

Facts to Know

Facts to Know

1. Chronic fatigue syndrome (CFS) can affect all races, sexes and socioeconomic groups. The U.S. Centers for Disease Control and Prevention (CDC) estimates that CFS affects women at four times the rate that it affects men. The condition is most common in people in their forties and fifties.

2. Studies find that adolescents are less likely to develop the condition than adults. Cases in children under 12 are even less common.

3. CFS does not appear to be a new illness. Relatively small outbreaks of similar disorders have been described in medical literature since the 1930s.

4. This illness is called "chronic fatigue syndrome" because it reflects the most common symptom—long-term persistent fatigue. However, the word fatigue is highly misleading, because it is one symptom among many and can create misunderstanding and trivialization of the illness.

5. There is no evidence to indicate that CFS is contagious but studies are being conducted to determine if it is safe for people with CFS to donate blood or if CFS occurs following transfusion.

6. Without objective diagnostic criteria, the prevalence of CFS is difficult to measure. In general, it is estimated that perhaps as many as one to four million people in the United States have CFS. CFS can begin suddenly or gradually. The sudden onset sometimes follows a respiratory, gastrointestinal or other acute infection, including mononucleosis. Other cases develop after emotional or physical traumas such as a serious accident, bereavement or surgery. Sometimes there is no obvious trigger for CFS.

7. The severity of CFS symptoms varies with each individual. Besides debilitating fatigue that does not go away even with rest, several common symptoms of CFS include:

   • Sleep that is unsatisfying and fails to refresh

   • Impaired short-term memory or concentration

   • Post-exertional malaise occurring within 12 to 24 hours of exertion and lasting 24 hours or more

   • Muscle and joint pain

   • More intense or changed patterns of headaches

   • Tender lymph nodes in neck or underarms

   • Recurrent sore throat

8. There is limited long-term data on the ultimate progression or regression of CFS. Symptoms can wax and wane, becoming more severe or improving over time.

9. No specific diagnostic tests or therapies for CFS exist. If your health care professional ha/s diagnosed you with CFS, treatment is focused on relieving symptoms, improving function and restoring quality of life.

10. There is no known cause of CFS. Viruses have been linked to the condition, including Epstein-Barr virus, human herpes virus type 6 (HHV-6), enteroviruses and coxsackie B virus. There is evidence of immune system dysfunction, low blood pressure, endocrine abnormalities and problems with the nervous system in CFS, but it is not known if these are cause or effect. No cause has yet been definitively connected to CFS, but research is ongoing.

Questions to Ask

Questions to Ask

Review the following Questions to Ask about chronic fatigue syndrome (CFS) so you're prepared to discuss this important health issue with your health care professional.

1. Do you have experience in diagnosing CFS? What tests will you conduct to rule out other causes for my symptoms?

2. Does my medical history support a diagnosis of CFS? Or does it suggest some other cause for my illness, such as hypothyroidism?

3. Do you treat other patients with CFS?

4. What treatments do you recommend for my symptoms?

5. When should I notify you of changes in my condition, such as the recurrence or appearance of new symptoms?

6. What strategies can I use to cope with this illness? How can I help my family, friends and coworkers understand my illness?

7. How will you follow my illness?

8. Do you recommend an exercise plan?

9. Where can I find more information on CFS? Is there any new research available regarding the causes or treatment of CFS?

10. Are there any CFS support groups in my community?

Key Q&A

Key Q&A

1. If there is no cure for chronic fatigue syndrome (CFS), what can my health care professional do to help me?

   Your health care professional will base your treatment on the symptoms you experience as a result of the illness. It is important to tell your health care professional about any symptoms you experience, since many are also symptoms of other diseases that can be treated. Also remember that new illnesses or conditions may present at any time and are not necessarily related to CFS. These need to be reported and the causes identified. Your health care professional can also recommend support groups and other therapies to help you cope with CFS.

2. Why do my symptoms seem to come and go?

   The symptoms are usually most severe in the first year or two. Thereafter, symptoms typically stabilize and then can persist chronically, wax and wane, or improve. Currently, an individual's course of illness cannot be predicted.

3. How can my health care professional diagnose CFS if there is no known cause and no diagnostic tests available?

   Your health care professional will determine if you have CFS based on your symptoms and medical history and through the use of medical tests and examinations that will rule out other probable causes for your symptoms.

4. Will I ever be cured?

   There is no cure for CFS at this time. In fact, there is no treatment for CFS, only treatments for the symptoms of CFS, such as headaches, sore throats or sleep problems. Some patients partially recover, a few may fully recover, while others may find their symptoms get worse. Others experience periodic relapses. Since little is known about the cause and progression of CFS, the course of your individual illness cannot be predicted. It is important to realize that people with CFS can be helped with appropriate care from a health care provider who understands CFS.

5. Is CFS contagious?

   There is no evidence that it can be transmitted through intimate or casual contact or that people with CFS need to be isolated in any way.

6. What are the symptoms of CFS?

   Besides debilitating fatigue that is not alleviated by rest, common symptoms of CFS include: more intense or changed patterns of headaches, reduced short-term memory or concentration, recurrent sore throats, tender lymph nodes, muscle discomfort or pain, joint pain without joint swelling or redness and sleep that is unsatisfying and fails to refresh. You may not experience all of these symptoms. The severity of symptoms varies with each individual.

7. Can CFS be confused with other illnesses or diseases?

   Yes. That's why it's very important you see a health care professional if you suspect you have CFS. Even if you've been diagnosed with CFS, talk to your health care professional about any new symptoms or changes in the course of your illness so other conditions can be ruled out.

8. Besides medical treatments for my symptoms, what can I do to minimize the effects of CFS?

   Often, health care professionals will suggest lifestyle changes, such as increased rest, the use of stress reduction and management techniques, dietary changes, nutritional supplementation and an individualized activity plan that can help minimize deconditioning. Supportive therapy, such as counseling, can also help to identify and develop effective coping strategies.

Organizations and Support

Organizations and Support

For information and support on coping with Chronic Fatigue Syndrome, please see the recommended organizations, books and Spanish-language resources listed below.

Organizations

American Occupational Therapy Association
Website: http://www.aota.org
Address: 4720 Montgomery Lane
P.O. Box 31220
Bethesda, MD 20824-1220
Hotline: 1-800-377-8555
Phone: 301-652-2682

CFIDS Association of America
Website: http://www.cfids.org
Address: PO Box 220398
Charlotte, NC 28222
Phone: 704-365-2343

International Association for Chronic Fatigue Syndrome
Website: http://www.iacfsme.org/
Address: 27 N. Wacker Drive, Suite 416
Chicago, IL 60606
Phone: 847-258-7248
Email: Admin@iacfsme.org

Books

Alternative Medicine Guide to Chronic Fatigue, Fibromyalgia & Environmental Illness
by Burton Goldberg and Editors of Alternative Medicine Digest

Bodylearning: How The Mind Learns From The Body: A Practical Approach
by Ginny Whitelaw

The Doctor's Guide To Chronic Fatigue Syndrome: Understanding, Treating, And Living With Cfids
by David S. Bell

Facing and Fighting Fatigue: A Practical Approach
by Benjamin H. Natelson

Spanish-language Resources

Medline Plus: Chronic Fatigue Syndrome
Website: http://www.nlm.nih.gov/medlineplus/spanish/ency/article/001244.htm
Address: Customer Service
US National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
Email: custserv@nlm.nih.gov

Family Doctor
Website: http://familydoctor.org/online/famdoces/home/common/pain/disorders/031.html

Foundation for Fibromyalgia and Chronic Fatigue Syndrome
Website: http://www.fundacionfatiga.org/