Chronic Fatigue Syndrome
Basics
Chronic fatigue syndrome is a complex condition characterized by extreme, long-lasting exhaustion. This disorder affects many different body systems, and is often disabling.
The main symptom of chronic fatigue syndrome (CFS) is tiredness that does not improve with rest and prevents you from carrying out normal daily activities. The term “chronic fatigue syndrome” was adopted in 1988, when researchers considered fatigue to be the major symptom. Today, physicians and patient groups often refer to this disorder as “chronic fatigue and immune-dysfunction syndrome” (CFIDS) to stress that it involves many other symptoms. Symptoms vary among patients, and can even change in the same person over time. Another name for CFS is myalgic encephalomyelitis.
The cause and cure of CFS are not known. Because it resembles other disorders and can be hard to recognize, doctors often miss it. CFS itself cannot be cured—thus, treatment focuses on relieving symptoms. The disorder may last for years. Although patients usually improve over time, most do not recover completely.
The people who first brought CFS to wide public notice in the 1980s were mostly affluent women. Thus, the illness was nicknamed “yuppie flu.” Since then, researchers have found that the disorder occurs in a wide range of social and economic classes and all races and ethnic groups.
Scientists do not know the exact prevalence of CFS because the disorder is so hard to define.
The CDC estimates that up to half a million people in the US have the symptoms of CFS, but have not been diagnosed by a doctor. The chronic fatigue and immune dysfunction syndrome (CFIDS) Association of America (www.cfids.org), a patient support group, estimates the number to be about 800,000. They estimate that 90% of people with CFS have not been diagnosed and are not receiving care.
Causes
No one knows what causes CFS. Many physicians suspect that a variety of factors, including viruses and other germs, immune system disorders, brain abnormalities, and blood pressure disorders act together to trigger it.
Scientists are studying several possible causes of CFS. In time they may discover a single cause, or find that several factors work together to produce the disorder. Because CFS is so hard to define, some physicians still believe that it is not a real disease, but is psychological in origin. However, the National Institute of Allergy and Infectious Diseases recognizes CFS as a serious illness, and the Centers for Disease Control and Prevention (CDC) have developed criteria to define it.
The following are some possible causes of CFS.
Symptoms
CFS can begin in different ways. Aside from fatigue, people with CFS experience a variety of other symptoms such as difficulty concentrating, sore throat, and muscle aches that either persist or come and go for more than six months.
CFS often begins after you have had a cold, an intestinal virus, or bronchitis. Teenagers and young adults sometimes get it after a bout of mononucleosis. Other people find that CFS starts during a period of high stress. But for some people it comes on slowly, and there is no distinct, triggering event. You feel too tired to carry out your normal daily routine, and may be easily exhausted by any activity.
Early in the illness, the most common symptoms are sore throat, fever, muscle pain, and muscle weakness. At this point you may sleep a great deal, but as time passes you may instead have difficulty falling asleep, or may wake up too soon.
To receive a diagnosis of CFS, you must have severe fatigue that has lasted at least six months without any other explanation, and must have at least four of the following symptoms: poor short-term memory or difficulty concentrating; a sore throat; tender lymph nodes; muscle and joint aches; a new type of headache that you never had before; sleep that does not make you feel rested; and fatigue after exercise that lasts more than 24 hours Table 01.
Among the many other symptoms patients experience are sensitivity to noise, light, food, medicines, and chemicals; difficulty sleeping; pain in the abdomen and digestive problems; mood swings; psychological problems such as anxiety, depression, and irritability; chronic cough; diarrhea; dizziness; dry eyes or mouth; earaches; irregular heartbeat; inability to tolerate alcohol; jaw pain; morning stiffness; nausea; night sweats; shortness of breath; weight loss; odd tingling sensations in the skin; and decreased interest in sex. It is important to remember that having any or even a combination of several of these disorders does not necessarily mean that you have CFS.
Table 1. Diagnosis and Symptoms of CFS
| You must meet both of the following criteria to be diagnosed with CFS |
| 1. You have severe fatigue that has lasted at least 6 months, and you have not been diagnosed with any other illness that could explain your symptoms. |
| 2. You have had at least 4 of the following symptoms for 6 months, and these symptoms did not begin before the fatigue: |
| Poor concentration or short-term memory |
| Sore throat |
| Tender lymph nodes |
| Muscle and joint aches |
| Headaches of a type you haven't had before |
| Unrestful sleep |
| Fatigue that lasts over 24 hours after exercise |
| Other common symptoms of CFS |
| Sensitivity to noise, light, food, medicines, and chemicals |
| Sleep problems |
| Abdominal pain |
| Digestive distress |
| Mood swings, anxiety, depression, and irritability |
| Chronic cough |
| Diarrhea |
| Dizziness |
| Dry eyes or mouth |
| Earaches |
| Irregular heartbeat |
| Intolerance to alcohol |
| Jaw pain |
| Morning stiffness |
| Nausea |
| Night sweats |
| Shortness of breath |
| Weight loss |
| Odd tingling sensations in the skin |
| Decreased interest in sex |
The course of CFS varies from one patient to another.
The symptoms of CFS can vary in an individual and from person to person. The illness involves many ups and downs. Many people reach a point early in their illness where the symptoms stop getting worse. After that, periods of feeling worse alternate with periods of feeling better.
Several illnesses have symptoms similar to those of CFS.
A number of other illnesses involve symptoms similar to those of CFS; especially the profound fatigue. A diagnosis of one of these conditions rules out a diagnosis of CFS:
Risk Factors
Although anyone can get CFS, it is more common in women.
CFS is two to four times more common in women than in men, and scientists do not know why. Adolescents can have CFS, but they get it less often than adults do. CFS has been reported in children under the age of 12.
No one knows for sure whether CFS is contagious.
There is no scientific evidence showing that CFS can be given from one person to another. Most people who come in contact with people who have the illness do not develop it. Studies of groups of cases in the same locations did not reveal any infectious organism that could be transmitted from person to person.
Diagnosis
Chronic fatigue syndrome is a complex condition characterized by extreme, long-lasting exhaustion. This disorder affects many different body systems, and is often disabling.
The main symptom of chronic fatigue syndrome (CFS) is tiredness that does not improve with rest and prevents you from carrying out normal daily activities. The term “chronic fatigue syndrome” was adopted in 1988, when researchers considered fatigue to be the major symptom. Today, physicians and patient groups often refer to this disorder as “chronic fatigue and immune-dysfunction syndrome” (CFIDS) to stress that it involves many other symptoms. Symptoms vary among patients, and can even change in the same person over time. Another name for CFS is myalgic encephalomyelitis.
The cause and cure of CFS are not known. Because it resembles other disorders and can be hard to recognize, doctors often miss it. CFS itself cannot be cured—thus, treatment focuses on relieving symptoms. The disorder may last for years. Although patients usually improve over time, most do not recover completely.
The people who first brought CFS to wide public notice in the 1980s were mostly affluent women. Thus, the illness was nicknamed “yuppie flu.” Since then, researchers have found that the disorder occurs in a wide range of social and economic classes and all races and ethnic groups.
Scientists do not know the exact prevalence of CFS because the disorder is so hard to define.
The CDC estimates that up to half a million people in the US have the symptoms of CFS, but have not been diagnosed by a doctor. The chronic fatigue and immune dysfunction syndrome (CFIDS) Association of America (www.cfids.org), a patient support group, estimates the number to be about 800,000. They estimate that 90% of people with CFS have not been diagnosed and are not receiving care.
No one knows what causes CFS. Many physicians suspect that a variety of factors, including viruses and other germs, immune system disorders, brain abnormalities, and blood pressure disorders act together to trigger it.
Scientists are studying several possible causes of CFS. In time they may discover a single cause, or find that several factors work together to produce the disorder. Because CFS is so hard to define, some physicians still believe that it is not a real disease, but is psychological in origin. However, the National Institute of Allergy and Infectious Diseases recognizes CFS as a serious illness, and the Centers for Disease Control and Prevention (CDC) have developed criteria to define it.
The following are some possible causes of CFS.
CFS can begin in different ways. Aside from fatigue, people with CFS experience a variety of other symptoms such as difficulty concentrating, sore throat, and muscle aches that either persist or come and go for more than six months.
CFS often begins after you have had a cold, an intestinal virus, or bronchitis. Teenagers and young adults sometimes get it after a bout of mononucleosis. Other people find that CFS starts during a period of high stress. But for some people it comes on slowly, and there is no distinct, triggering event. You feel too tired to carry out your normal daily routine, and may be easily exhausted by any activity.
Early in the illness, the most common symptoms are sore throat, fever, muscle pain, and muscle weakness. At this point you may sleep a great deal, but as time passes you may instead have difficulty falling asleep, or may wake up too soon.
To receive a diagnosis of CFS, you must have severe fatigue that has lasted at least six months without any other explanation, and must have at least four of the following symptoms: poor short-term memory or difficulty concentrating; a sore throat; tender lymph nodes; muscle and joint aches; a new type of headache that you never had before; sleep that does not make you feel rested; and fatigue after exercise that lasts more than 24 hours Table 01.
Among the many other symptoms patients experience are sensitivity to noise, light, food, medicines, and chemicals; difficulty sleeping; pain in the abdomen and digestive problems; mood swings; psychological problems such as anxiety, depression, and irritability; chronic cough; diarrhea; dizziness; dry eyes or mouth; earaches; irregular heartbeat; inability to tolerate alcohol; jaw pain; morning stiffness; nausea; night sweats; shortness of breath; weight loss; odd tingling sensations in the skin; and decreased interest in sex. It is important to remember that having any or even a combination of several of these disorders does not necessarily mean that you have CFS.
Table 1. Diagnosis and Symptoms of CFS
| You must meet both of the following criteria to be diagnosed with CFS |
| 1. You have severe fatigue that has lasted at least 6 months, and you have not been diagnosed with any other illness that could explain your symptoms. |
| 2. You have had at least 4 of the following symptoms for 6 months, and these symptoms did not begin before the fatigue: |
| Poor concentration or short-term memory |
| Sore throat |
| Tender lymph nodes |
| Muscle and joint aches |
| Headaches of a type you haven't had before |
| Unrestful sleep |
| Fatigue that lasts over 24 hours after exercise |
| Other common symptoms of CFS |
| Sensitivity to noise, light, food, medicines, and chemicals |
| Sleep problems |
| Abdominal pain |
| Digestive distress |
| Mood swings, anxiety, depression, and irritability |
| Chronic cough |
| Diarrhea |
| Dizziness |
| Dry eyes or mouth |
| Earaches |
| Irregular heartbeat |
| Intolerance to alcohol |
| Jaw pain |
| Morning stiffness |
| Nausea |
| Night sweats |
| Shortness of breath |
| Weight loss |
| Odd tingling sensations in the skin |
| Decreased interest in sex |
The course of CFS varies from one patient to another.
The symptoms of CFS can vary in an individual and from person to person. The illness involves many ups and downs. Many people reach a point early in their illness where the symptoms stop getting worse. After that, periods of feeling worse alternate with periods of feeling better.
Several illnesses have symptoms similar to those of CFS.
A number of other illnesses involve symptoms similar to those of CFS; especially the profound fatigue. A diagnosis of one of these conditions rules out a diagnosis of CFS:
Although anyone can get CFS, it is more common in women.
CFS is two to four times more common in women than in men, and scientists do not know why. Adolescents can have CFS, but they get it less often than adults do. CFS has been reported in children under the age of 12.
No one knows for sure whether CFS is contagious.
There is no scientific evidence showing that CFS can be given from one person to another. Most people who come in contact with people who have the illness do not develop it. Studies of groups of cases in the same locations did not reveal any infectious organism that could be transmitted from person to person.
There is no test for CFS. Diagnosis involves making sure you have no other disorder, and then deciding whether you meet the CDC criteria for CFS Table 01.
To meet the CDC criteria, you must have severe fatigue that has lasted at least six months, and not have been diagnosed with any other illness that could explain your symptoms. In addition, you must have had certain symptoms for six months that did not begin before your fatigue began. Such symptoms include poor concentration or short-term memory, sore throat, and tender lymph nodes. Many symptoms of CFS mimic those of other diseases—as a result, CFS is hard to diagnose.
Your doctor will conduct a physical examination and a series of tests to rule out other conditions that may be causing your symptoms.
Such tests include questions about your medical history and a mental status examination to test your concentration and memory. You will also have standard laboratory tests of your blood and urine. If the results suggest some other illness, you may be tested further to confirm the diagnosis.
If your doctor finds no other cause for the symptoms and you meet the CDC criteria, you may in fact have CFS.
Prevention and Screening
Treatment
Eat a balanced, healthy diet.
Eat whole grains, vegetables, and low-fat meats. Avoid stimulants such as caffeine, alcohol, and nicotine, and cut back on animal fats, salt, and sweeteners. Listen to your body, and avoid foods that you find difficult to digest. Eat simple meals that do not mix many different foods.
Get enough mental and physical rest and relaxation.
Learn to pace yourself to avoid physical, intellectual, and emotional stress. Get regular exercise at a level that does not cause more fatigue.
Stress makes your symptoms worse, and may lead to a relapse. Reduce stress in your life as much as possible, and avoid exertion beyond your limits. You may need to change plans or stop an activity if you begin to feel fatigued. Regular, aerobic exercise such as walking improves symptoms.
Setting up a regular daily routine will help you avoid the common mistake of doing too much when you feel better, which often leads to a relapse of symptoms. This is known as “push-crash.”
Your doctor is the best source of information on the drug treatment choices available to you.
Follow a carefully designed exercise program.
Patients with CFS usually cannot tolerate their previous amount of activity. However, you should be as active as possible without becoming overtired. Limited exercise, as prescribed by a doctor or a physical therapist, is important for maintaining muscle tone. Exercise that does not increase body heat too much or only slightly increases your heart rate is best, such as walking and light weight training.
Get emotional and psychological support to help you cope with the effects of CFS.
CFS often causes great emotional distress. It affects your ability to earn a living and to take care of other people, which may result in a loss of self-esteem. You may need to give up many activities you formerly enjoyed. CFS changes your relationships with family and friends, who may not understand or accept your illness, and may fail to give you enough support. Employers may also not realize the nature of your disorder.
You may want to seek therapy or counseling.
An approach called “cognitive behavior therapy” can help ease distress by teaching you how to cope better with the changes in your life and the people with whom you interact. Family therapy can help you express your needs more clearly, and reduce the negative effect of CFS on your family.
You may find it useful to join a local support group.
Meeting other people with CFS may be helpful. A good support group includes both newcomers and people who have had CFS for a longer time. The group should make you feel comfortable. The leader should be kind and encourage all members to speak.
However, not everyone finds a support group useful. For some people, the group only increases their stress.
Many patients report that dietary supplements and herbs have relieved their symptoms. However, these claims have not been confirmed by scientific research Table 02.
Table 2. Dietary Supplements and Herbs for CFS
| Type of remedy | Name | Symptoms treated | Side effects |
|---|---|---|---|
| Hormones | DHEA (dehydroepiandrosterone) | Low energy, poor concentration | Rapid heartbeat, nervousness |
| Melatonin | Poor sleep | Nervousness, headaches, early menstrual periods in women | |
| Vitamins | Vitamin A | Tendency to infection | Overdose: appetite loss, irritability, itching, headaches, mouth ulcers |
| Vitamin B complex | Low energy level, premenstrual syndrome, poor sleep, depression | None | |
| Vitamin B12 injections | Low energy, poor concentration | Allergic reactions to solution, sometimes rashes | |
| Vitamin C | Poor blood flow, low immune function | Some patients cannot tolerate | |
| Coenzymes | Coenzyme Q10 | Fatigue | Few, but may cause nervousness and insomnia |
| NADH | Low energy, poor concentration | Minor: gas, loss of appetite, indigestion | |
| Amino acids | Various, depending on symptoms | Fatigue, poor concentration, digestive problems | Various, depending on which amino acid is taken |
| Minerals | Magnesium | Pain, muscle weakness, lack of stamina | High doses: diarrhea |
| Zinc | Low immune function, sore throat, other flu-like symptoms | High doses: serious stomach and intestinal problems | |
| Bioflavonoid | Quercetin | Asthma, allergies | High doses: diarrhea |
| Essential fatty acid | Evening primrose oil | Low energy, skin problems, mood swings | Rare: headache, digestive discomfort |
| Herbs, such as echinacea, Gingko biloba, and chamomile | Various, depending on symptoms | Useful for those sensitive to drugs or as a supplement to other therapy | Various, depending on the herb and patient's other medicines; can be serious |
The effectiveness of herbal remedies has not been proven by scientific research
Supplements that many patients have found to be helpful include hormones and vitamins.
Some doctors and patients say that the hormone DHEA has given them more energy, made their minds clearer, and boosted their immune systems. Other patients have had side effects including rapid heartbeat and nervousness. Some very ill patients who took DHEA have had relapses. DHEA may be suitable for people with mild illness.
Many physicians include vitamin supplements as part of treatment for CFS, believing that ill people need greater amounts of vitamins. They also believe that CFS patients may not absorb all the vitamins in their food.
In particular, some physicians recommend extra amounts of vitamins A, B, and C. Some patients also say that injections of vitamin B12 increases their energy and mental clarity. There are a few reports of allergic reactions to these injections.
Coenzyme Q10 is a vitamin-like substance that is often used to treat fatigue. Many patients report that it increases energy. Although it has few side effects, some patients report that it makes them nervous and causes sleep problems.
NADH, also a coenzyme, is reported to improve energy and concentration. One small research study of NADH gave some support to this claim.
Other supplements that are said to benefit people with CFS include amino acids (the building blocks of proteins); minerals, including zinc and magnesium; the bioflavonoid quercetin; the hormone melatonin; and evening primrose oil, which contains nutrients called essential fatty acids. There is no well-designed scientific evidence to support any claims of benefit from these substances.
Herbs taken in the form of teas or tinctures may help to relieve symptoms.
Herbs can relieve particular symptoms, although they tend to become less effective over the long term. Herbs that are said to be helpful are astralagus, comfrey, echinacea, garlic, Ginkgo biloba, St. John’s wort, chamomile, ginger, goldenseal, gotu kola, licorice, milk thistle, uva ursi, and valerian.
Because herbs contain powerful substances, they can cause serious side effects. They can also interact with prescription drugs (for example, St. John’s wort must not be taken with prescription antidepressants, especially those called MAO inhibitors). Thus, herbs should used with caution. It is best to consult with an herbalist and a health care professional before taking herbs.
CFS patients use a wide variety of other alternative therapies to relieve symptoms.
You may find that various forms of alternative medicine or supportive therapies can relieve pain, help you relax, and relieve stress. Such methods include different types of massage (acupressure, therapeutic touch, craniosacral therapy, reflexology, lymphatic drainage, Swedish massage), acupuncture, warm- or cool-water baths, chiropractic, self-hypnosis, tai chi, and yoga. For most of these therapies, you will need to find a qualified instructor or practitioner.
There is no evidence that CFS can be transmitted to an unborn child, or that the disorder will affect the baby. However, pregnant women need to be extra careful.
If you are pregnant, you may find that your CFS symptoms continue unchanged. However, some pregnant women report that their symptoms disappear early in the pregnancy, and do not return until about six weeks after delivery.
You should mention your CFS to your obstetrician. The doctor may tell you to stop taking many of the drugs used to treat the CFS symptoms, or to decrease the dose until you have stopped breast-feeding.
When deciding whether to become pregnant, you and your partner should think about whether you will have the energy needed to care for a child.
Ask your doctor about precautions regarding contagious diseases and vaccines.
People with CFS are more likely to have adverse reactions to vaccines, such as flu shots. You should discuss the possible risks and benefits with your doctor before deciding to have any vaccine.
The outcome of CFS varies greatly among patients.
Some CFS patients recover completely, although the actual percentage of those who do is not known. Some people become well enough to return to work and resume other activities, but they still have some symptoms. Some have periods of wellness that alternate with periods of illness. Others stay more or less the same, and still others continue to get worse.
The CDC is studying the long-term outcome of CFS. Early results suggest that although you may recover at any point in the illness, your greatest chance of recovery occurs during the first five years. The CDC also finds that people whose CFS developed suddenly seem to recover nearly twice as often as those whose condition developed slowly.
Your treatments will need to change during the course of your illness.
Since CFS patients are generally very sensitive to drugs, your doctor will almost always begin treatment with very small doses to reduce the chance of an adverse reaction. Depending on your response, the doctor will increase the dose if necessary.
It’s helpful to try one treatment at a time. This helps you see what works and what does not. Remember that many drugs take several weeks to show a benefit.
As your illness continues, treatments that did not work at one stage may be useful later on.