What is chronic fatigue syndrome?
Chronic Fatigue Syndrome (CFS) is an illness characterized by severe long-term fatigue, cognitive disorders sometimes referred to as "brain fog", sleep disturbances, generalized pain, gastro-intestinal problems and a myriad of other symptoms. While the illness varies in severity from patient to patient, CFS adversely affects the lives of all those who have it. In the most severe cases the patient can become bedridden and completely disabled.
Chronic Fatigue Syndrome is also known as chronic fatigue and immune dysfunction syndrome (CFIDS), and outside the US it is often referred to as myalgic encephalomyelitis (ME). In the past, CFS has been called chronic Epstein-Barr virus (CEBV), post-viral fatigue syndrome and chronic mononucleosis. There is currently a drive underway by patient groups to change the name as they feel the current name trivializes the disease and furthers that notion that it is not a "real" illness.
What is the prevalence of CFS?
CDC studies have estimated that approximately 500,000 persons in the US have CFS. Others studies have put the number closer to 1 million. The disease is about 3 times more common in women
than men which is similar to the ratio seen in immune-related disorders. CFS affects persons of all ages, races and socioeconomic groups. CFS does affect adolescents, but in lesser frequency than in adults.
The cause of CFS remains unknown. While a single cause or causes remain unclear, it is possible that CFS results from multiple causes. Current theories being explored are viruses, environmental toxins, genetic factors and neuroendocrine dysfunction, or dysfunction of the hypothalamic-pituitary-adrenal (HPA) axis.
CFS was initially thought to be caused by Epstein-Barr virus, the virus that causes mononucleosis, but it now seems clear that CFS is not caused exclusively by EBV or any single recognized infectious disease agent. CFS often seems to be "triggered" by stress or by or a traumatic event such as surgery, or an accident or injury, or following a viral infection. While CFS often follows these events, researchers believe that the illness was latent beforehand and that these events were not the primary cause.
For many, CFS begins after a cold or flu that does not go away. Some instances occur following a bout of mononucleosis. Other cases occur after a stressful event. In other instances, CFS develops gradually without any clear precipitating event.
How is CFS diagnosed and what are the symptoms?
Doctors find it difficult to diagnose CFS because the symptoms are similar to other diseases. There are no markers or blood tests that are specific for CFS, so diagnosis must be made based on the pattern of symptoms. Diagnosis also involves ruling out any other diseases that have similar symptoms.
The CDC has established a set of guidelines for identifying CFS. According to the revised CDC case definition developed in 1994, clinically evaluated, unexplained chronic fatigue cases can be classified as chronic fatigue syndrome if the patient meets both the following criteria:
1. Clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (i.e., not lifelong), is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction in previous levels of occupational, educational, social, or personal activities.
2. The concurrent occurrence of four or more of the following symptoms:
- Substantial impairment in short-term memory or concentration
- Sore throat
- Tender lymph nodes
- Muscle pain
- Multi-joint pain without swelling or redness
- Headaches of a new type, pattern, or severity
- Unrefreshing sleep
- Post-exertional malaise lasting more than 24 hours
These symptoms must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue.
Conditions that explain chronic fatigue exclude a diagnosis of CFS
1. Any active medical condition that may explain the presence of chronic fatigue, such as untreated hypothyroidism, sleep apnea and narcolepsy, and iatrogenic conditions such as side effects of medication.
2. Some diagnosable illnesses may relapse or may not have completely resolved during treatment. If the persistence of such a condition could explain the presence of chronic fatigue, and if it cannot be clearly established that the original condition has completely resolved with treatment, then such patients should not be classified as having CFS. Examples of illnesses that can present such a picture include some types of malignancies and chronic cases of hepatitis B or C virus infection.
3. Any past or current diagnosis of a major depressive disorder with psychotic or melancholic features;
- bipolar affective disorders
- schizophrenia of any subtype
- delusional disorders of any subtype
- dementias of any subtype
- anorexia nervosa
- or bulemia nervosa
4. Alcohol or other substance abuse, occurring within 2 years of the onset of chronic fatigue and any time afterwards.
5. Severe obesity as defined by a body mass index.
Conditions that do not exclude a diagnosis of CFS
1. Any condition defined primarily by symptoms that cannot be confirmed by diagnostic laboratory tests, including fibromyalgia, anxiety disorders, somatoform disorders, nonpsychotic or melancholic depression, neurasthenia, and multiple chemical sensitivity disorder.
2. Any condition under specific treatment sufficient to alleviate all symptoms related to that condition and for which the adequacy of treatment has been documented. Such conditions include hypothyroidism for which the adequacy of replacement hormone has been verified by normal thyroid-stimulating hormone levels, or asthma in which the adequacy of treatment has been determined by pulmonary function and other testing.
3. Any condition, such as Lyme disease or syphillis, that was treated with definitive therapy before development of chronic symptoms.
4. Any isolated and unexplained physical examination finding, or laboratory or imaging test abnormality that is insufficient to strongly suggest the existence of an exclusionary condition. Such conditions include an elevated antinuclear antibody titer that is inadequate, without additional laboratory or clinical evidence, to strongly support a diagnosis of a discrete connective tissue disorder.
Those with CFS often experience other symptoms not included in the list from the CDC. Two CFS doctors did a study of the most common symptoms found in those meeting the 1988 CDC criteria for CFS. The symptoms along with their frequencies are listed below:
Symptom/sign Frequency (%)
- fatigue 100
- low-grade fever 60 - 95
- myalgias 20 - 95
- sleep disorder 15 - 90
- impaired cognition 50 - 85
- depression 70 - 85
- headache 35 - 85
- pharyngitis 50 - 75
- anxiety 50 - 70
- muscle weakness 40 - 70
- postexertional malaise 50 - 60
- worsening of premenstrual
- stiffness 50 - 60
- visual blurring 50 - 60
- nocturia 50 - 60
- nausea 50 - 60
- dizziness 30 - 50
- arthralgias 40 - 50
- tachychardia 40 - 50
- dry eyes 30 - 40
- dry mouth 30 - 40
- diarrhea 30 - 40
- anorexia 30 - 40
- cough 30 - 40
- digital swelling 30 - 40
- night sweats 30 - 40
- painful lymph nodes 30 - 40
- rash 30 - 40
Source: Komaroff AL, Buchwald D. Symptoms and signs of chronic fatigue syndrome. Rev Infect Dis 1991;13(Suppl 1):S8-11
The most important step the patient can take is to avoid stress and to get adequate rest. Stress in this case refers to not just emotional stress, but to any physical, mental or emotional stressors that can upset the balance of the patient. This can be as subtle as loud noises or bright lights. CFS patients are very sensitive to stress, and research suggests that the body's mechanism for handling stress is not functioning properly. Patients often recall a stressful event as being the trigger for initially getting the disease, and stress during the course of the illness worsens the condition and can cause short-term and long-term setbacks. It is therefore important for the patient to avoid stress and to learn to manage stress more effectively. Many find meditation or deep-breathing exercises to be helpful stress management tools.
Patients with CFS often experience substantial improvement by making dietary changes. CFS patients are sensitive to alcohol and this should be eliminated from the diet as should tobacco. Caffeine puts stress on the already taxed adrenal glands and should be reduced or eliminated as well. Sugar and white flour consumption should be reduced as they cause a yo-yo effect
on blood sugar and energy levels. CFS patients should also aim for a diet high in vegetables, fruits and whole grains and should avoid animal fats and processed foods. Finally, those with CFS often develop food allergies. Identifying and eliminating foods to which they are allergic is very important.
Limited exercise can be helpful for those that are able to do so. Exercise will help to maintain muscle and bone strength and help with weight control. It is very important that those with CFS only exercise to their tolerance level and to not overdo it. They should limit the exercise or physical exertion to
he point that they do not feel the effects the following day. As the patient's health improves, he or she will be able to gradually increase the level of activity.
Learning how to manage or cope with the illness will improve the level at which the CFS sufferer can function as well as
her quality of life.
- The CFS patient needs to understand that
she is not alone. There are thousands of others who are experiencing the same symptoms and struggles.
- It is important to realize that
she has a real disease. While some doctors do not acknowledge CFS as a real disease and some people will think that the disease is all in
her head, the fact remains that she
has a real disease that
produces real physical symptoms.
- It is important for the CFS patient to find a level at which
she is best able to function. This will be different for each person.
She will find an envelope in which
she can function and be comfortable. Outside of this envelope, past her level of tolerance, the CFS patient can experience setbacks or relapses.
- It is important for the CFS patient to develop a new sense of self and self worth. This needs to be based on who
she is as a person, not on what she does. This is difficult for a lot of people as their sense of self is based on their accomplishments, be it work or other aspects of their life.
- The CFS patient also needs to find new sources of support. She need to search out friends or family members who will accept the illness and help her to cope with it. There are support groups for CFS in cities all over the country as well as on the web. Many find these to be helpful.
What is the course of the illness?
The course of the illness varies from person to person. Some will recover within 1-2 years. Others may recover after 6 years or more. For some there is no recovery. In most long-standing cases, the illness seems to go in cycles that follow no particular pattern.
What about natural remedies for chronic fatigue syndrome?
Many doctors, including many traditional practitioners, recommend nutritional supplements for CFS. Individuals with CFS utilize a wide variety of nutritional supplements. Some of the more popular supplements include those that enhance energy production including ENADA, coenzyme q10, malic acid plus magnesium, alpha lipoic acid and L-Carnitine.
One group of supplement that has gained a lot of attention recently are the high quality, undenatured whey proteins. Research suggests that these products can enhance the immune system as well as improve detoxification by increasing glutathione production.
Some doctors and researchers have theorized that CFS patients experience increased levels of oxidative or free radical damage and recommend antioxidants to help prevent further damage. These antioxidants include vitamins C and E, alpha lipoic acid, grape seed extract, and pycnogenol.
Other popular supplements for CFS include high quality multivitamins, B complex vitamins, essential fatty acids such as those found in flax seed oil, ginkgo biloba and natural sleep products including valerian root and melatonin. This list is
only a partial list of the many supplements used by those with CFS. Response to supplements varies from person to person.