Chronic fatigue syndrome is a serious, complicated disorder causing debilitating fatigue, a continued tiredness not relieved by rest that is not directly caused by other medical conditions. It is also called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and chronic fatigue immune dysfunction syndrome (CFIDS).
This year, the Institute of Medicine released a landmark report containing recommendations for ME/CFS, one of which calls for changing the name to systemic exertion intolerance disease, or SEID. World and federal health agencies have not formally adopted the new name, though it is used in the CFS literature and community.
ME/CFS affects about 2.5 million Americans. Women are two to four times more likely than men to contract the syndrome. Though it generally affects women in their 40s and 50s, anyone can get it. A range of symptoms can last from six months to years, affecting a person’s ability to perform daily tasks such as dressing and bathing.
Scientists don’t know exactly what causes chronic fatigue syndrome. A combination of factors may affect people born with a predisposition for the disorder. Since some people develop ME/CFS after having a viral infection, it is possible some viruses trigger the disorder. Suspicious viruses include Epstein-Barr virus, human herpes virus 6 and murine leukemia viruses. Other factors may include immune system problems, hormonal imbalances and physiological stress. No conclusive link has been found.
The immune systems of people with ME/CFS appear to be impaired slightly, but it’s unclear if this impairment is enough to cause the disorder. Affected people sometimes experience abnormal blood levels of hormones produced in the hypothalamus, pituitary glands or adrenal glands, but the significance of these abnormalities is unknown. Difficulty managing stress may contribute to the development of ME/CFS.
The chief symptoms of ME/CFS include at least five of the following: feeling ill for more than 24 hours after physical activity; muscle pain or aches; problems with concentration, attention or memory; headaches of a new type, pattern or strength; pain in multiple joints without redness; not feeling refreshed after sleeping or having trouble sleeping; a constant or frequently recurring sore throat; feeling dizzy or faint when sitting up or standing; and tender lymph nodes in the neck or under the arms.
Symptoms may worsen after activities that use mental and physical energy. They may come and go or last for weeks, months or years. Complications include depression, social isolation, lifestyle restrictions and increased work absences.
If you think you have MF/CFS, contact your health care provider. There is no diagnostic test; your provider will ask about your physical and mental health and sleeping patterns and may order urine and blood tests. Some patients have abnormal brain MRIs and an elevated white blood count.
Because the symptoms can mimic other health problems, your doctor must rule out other illnesses before diagnosing ME/CFS. These may include sleep disorders; medical diseases such as anemia, diabetes and hypothyroidism; and mental health disorders such as depression, anxiety, bipolar disorder and schizophrenia.
As there is no Food and Drug Administration-approved treatment specific to ME/CFS, treatment usually focuses on relieving symptoms. Chronic fatigue affects people in different ways, so your treatment will be tailored to your symptoms. Many people with ME/CFS are also depressed. Treating depression makes it easier to cope with the problems associated with the disorder. Symptom relief may require antidepressants, sleeping pills and anti-anxiety drugs.
The most effective treatment appears to be a two-pronged approach combining psychological counseling with a gentle exercise program. A physical therapist can determine what types of exercise are best for you. Inactive people often begin with range-of-motion and stretching exercises a few minutes a day. If you’re exhausted the next day, you’re doing too much. Your strength and endurance will improve as you gradually increase exercise intensity over time. Talking with a counselor can help you work around the limitations ME/CFS imposes. Feeling more in control of your life can improve your outlook dramatically.
Take measures to reduce stress, improve sleep habits and pace yourself to avoid fatigue. Avoid or limit overexertion and emotional stress. Allow yourself time each day to relax. That may mean learning to say “no” without guilt. Go to bed and get up at the same time each day. Limit daytime napping. Avoid caffeine, alcohol and nicotine. Keep activity on an even level; if you do too much on good days, you may have more bad days.
Many alternative therapies have been promoted for ME/CFS. It is difficult to determine whether they work because symptoms often are linked to mood and vary from day to day. Acupuncture, massage therapy, hypnosis, biofeedback, meditation, deep breathing exercises, yoga or tai chi may help relieve the pain of ME/CFS.
For many people, ME/CFS symptoms are more bothersome early in the course of the illness and gradually decrease. Emotional support and counseling may help you and your loved ones deal with the uncertainties and restrictions. It may be therapeutic to join a support group and meet other people with ME/ CFS. This approach is not for everyone. Experiment and use your own judgment to determine what’s best for you.
The long-term outlook for patients with ME/CFS varies. Some individuals recover after six months to a year; some never feel as they did before. Studies suggest you are more likely to get better if you receive extensive rehabilitation.
The content of this article is for informational purposes only. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition.
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