CHRONIC FATIGUE SYNDROME - a patient's guide
- Chronic Fatigue Syndrome is a condition characterised by ongoing fatigue
- It is also known as Myalgic Encephalomyelitis (ME)
- The cause is unknown, although there are many theories, including possible reaction to viral infection
- About two percent of the population suffer from the illness
- Women are more at risk then men
- There is no specific treatment for the condition but exercise and cognitive behavioural therapy has been shown to be effective
- It is important to have underlying medical problems thoroughly checked for by a doctor
What is it?
Chronic Fatigue Syndrome is a debilitating condition characterised by severe fatigue and possibly other symptoms that cannot be explained by an underlying medical condition.
It is also known as "Chronic Fatigue and Immune Dysfunction Syndrome" (CFIDS) and "Myalgic Encephalomyelitis" (ME). It has been called the "Tapanui Flu" in New Zealand. It has also been dubbed the "yuppie flu" but this description has been rejected by the medical community.
The cause of CFS is not known but a popular theory is a reaction to a virus. The Epstein Barr virus (glandular fever) and Lyme disease in particular has been linked to CFS. However, there is no convincing evidence that most cases of CFS are caused by an infection.
Other theories suggests that chronic fatigue is related to overwork, stress, problems with the immune system, low blood pressure, hormonal imbalance or environmental toxins. In some cases it may follow the death of a close relative or an operation.
Several studies have shown that CFS patients are more likely to suffer from allergies. However, not all CFS patients have an allergy.
The majority of patients complain of symptoms that could be related to the central nervous system (brain and spinal cord).
The illness is not an imaginary one or the result of people's anxiety. In the past decade, medical science has found some biological abnormalities occur more often in patients with CFS.
Up to two percent of the population suffer from CFS. It is estimated that half a million Americans suffer from a chronic fatigue illness.
CFS affects all racial groups but women are more at risk of CFS.
Children with the syndrome are more likely to make a full recovery. One surveillance study found 31 percent of adult patients recovered within the first five years of the illness, and 48 percent had recovered within 10 years. However, some of these patients still experienced some symptoms.
What are the symptoms?
The main symptoms are unexplained fatigue which is not the result of exercise, and problems with intellectual functioning such as short-term memory loss or lack of concentration.
The fatigue must be present all the time to be defined as CFS, and it is so debilitating that a person can no longer maintain their previous levels of functioning in their work and social lives.
Other physical symptoms may include a sore throat, enlarged lymph nodes, muscle pain and joint pain without swelling, unrefreshing sleep and unusual headaches.
Other medical conditions such as anaemia and hypothyroidism must be ruled out before a diagnosis of CFS can be made. Therefore, your doctor may order some blood and urine tests to exclude other conditions.
In the first six months of the illness, there is a big decrease in people's level of functioning followed by a gradual improvement. It is unknown whether the slow improvement is linked to an improvement in the illness itself or related to the patient's increasing ability to cope with the syndrome. In some instances the illness waxes and wanes over a period of years.
There is a difference between the American and British criteria for chronic fatigue syndrome. The British criteria requires the presence of mental fatigue, whereas the American criteria requires the presence of a number of physical symptoms.
Some patients also report problems with nausea, irritable bowel syndrome, bloating, chronic cough, diarrhoea, dry eyes, irregular heartbeat, chest pain, jaw pain, night sweats, alcohol and drug intolerance, dizzy spells, tingling sensations and lack of appetite.
The US Centers for Disease Control and Prevention defines CFS as debilitating fatigue which lasts for at least six months, has a sudden onset, is not improved by resting, and is associated with at least four of the following symptoms:
- Sore throat
- Swollen lymph nodes
- Joint pain
- Muscle pain
- New headaches
- Unrefreshing sleep
- Discomfort and exhaustion after exercise and exertion
The following conditions exclude a diagnosis of CFS:
- Medical conditions which may explain the presence of tiredness and fatigue such as sleep apnoea, narcolepsy, hypothyroidism, and side effects to some pharmaceuticals.
- Slow recovery from a medical condition which may produce fatigue such as cancer, or hepatitis B or C.
- Past or current mental illness such as major depression, bipolar disorder (manic depression), schizophrenia, or anorexia nervosa or bulimia.
- Severe obesity with a BMI over 45.
- Alcohol or substance abuse anytime within the past two years.
The following conditions may still allow for a diagnosis of CFS:
- Any condition which cannot be confirmed by a laboratory test such as fibromyalgia, anxiety disorders, and non-psychotic depression.
- Any condition such as Lyme disease that was properly treated before the development of chronic fatigue.
- Any condition for which successful treatment has been documented such as hypothyroidism and asthma in which subsequent tests have proved adequate treatment.
- Any finding on physical examination or laboratory test which is insufficient to explain the existence of another medical condition.
What can be done to help?
There is no specific treatment for CFS as there is no known cure. However, several agents can be used to relieve symptoms.
Nonsteroidal anti-inflammatory drugs (NSAIDs) are useful for treating muscle pains, joint pain and headaches. However, they should be used with caution in the long term because of their potential to cause kidney damage, and stomach upset.
Some patients are prescribed antihypotensive medications if they have low blood pressure on standing.
Others who suffer from allergies may benefit from non-sedating antihistamines such as astemizole and loratadine. Sedating antihistamines may be beneficial before bedtime.
People with CFS should try to avoid stress, follow a regular routine and remain as active as possible. Regular exercise has been found to be helpful.
A review in the British Medical Journal has looked at the evidence for the following treatments and rated them accordingly:
- Cognitive behavioural therapy
- Dietary supplements
- Oral nicotinamide adenine dinucleotide (NADH)
Unlikely to be beneficial:
Likely to be ineffective or harmful:
- Prolonged rest
Two studies have found a good exercise programme can produce a substantial reduction in fatigue among chronic fatigue sufferers.
Cognitive Behavioural Therapy
A review of all random clinical trials has found cognitive behavioural therapy by skilled therapists is effective in improving the outcome of the illness.
Studies have found any benefit from low dose glucocorticoid treatment appears to be short lived, and higher doses have unwanted side effects.
There is limited evidence to support the use of antidepressants in the treatment of CFS. However, if depression is present, they may play an important role. Some doctors believe many cases may represent atypical depression, and a trial of antidepressant medication can be considered.
One small study found limited benefit from magnesium injections over a six week period. Two small studies of evening primrose oil produced mixed results.
Four small studies have found limited benefit and unwanted side effects in people treated with IgG. Other forms of immunotherapy showed no benefit.
There is no evidence that this is effective in the management of CFS. There is some indirect evidence that prolonged rest could actually worsen fatigue in sufferers.
Several studies are underway in order to find a cause for CFS (it is unlikely however that there is a single cause), and to find better treatments for the illness.
One properly controlled study is looking at whether medications to improve low blood pressure (neurally mediated hypotension) are effective in the treatment of CFS.
More research is also necessary into the theory that CFS is related to hormonal abnormalities.
Researchers are studying the drug Ampligen which stimulates the immune system. One report found the drug led to modest improvements in intellectual functioning among CFS patients. However, more research is required. The drug dehydroepiandrosterone (DHEA) is also under investigation.
People with CFS should be under the supervision of a doctor. See your doctor if you are suffering from ongoing fatigue.