CFS/ME is a disabling and possibly infectious neurological illness affecting up to 0.5-1% of the population. It is most common in women, but can affect anyone, including children.
Background
CFS/ME is often thought of as a "new" illness, but it has been known with the name "myalgic encephalomyelitis" (meaning "inflammation of the brain and spinal cord causing muscle pain") since the 1950s. Several epidemics have been reported since the 1930s. Nursing pioneer Florence Nightingale is thought to have had CFS/ME.
In the 1980s outbreaks in the United States garnered new attention to the illness. Even though it already had a name, ME, it was "renamed" to chronic fatigue syndrome in 1988. The name "CFS" has been criticized for belittling the illness - almost all chronic illnesses cause fatigue and fatigue is not the worst symptom for many people with CFS/ME.
The term "ME" is still commonly used e.g. in Australia, New Zealand and the United Kingdom. In the United States some people prefer to use the term "CFIDS" for "chronic fatigue immune dysfunction syndrome."
CFS/ME is not the same as "chronic fatigue" or burnout. There are many conditions that can cause fatigue.
Symptoms
CFS/ME is primarily a neurological illness, but also tends to cause endocrinological (hormonal) and immune dysfunction. It can affect essentially all bodily systems.
Common symptoms include muscle weakness, cognitive dysfunction ("brain fog"), orthostatic hypotension (low blood pressure on standing up), headaches, fever, swollen lymph nodes, cardiac palpitations and arrhythmias, nausea and vertigo. People with CFS/ME often have other conditions like fibromyalgia, IBS and joint hypermobility.
The severity of the illness varies from mild to extremely severe. Some people are housebound or bedbound by the illness and a small minority even die of it, though most cases are not life-threatening.
What sets CFS/ME apart from other conditions is the degree of post-exertional malaise. Even small exertion can cause a relapse lasting for days, weeks or even months. The malaise may be delayed by a day or two.
CFS/ME usually begins very suddenly, often with flu-like symptoms, though gradual onset is possible.
Diagnosis
The most commonly used CDC diagnostic criteria are very vague and prone to misdiagnosis. The 2003 Canadian diagnostic criteria are much more specific and accurate.
Before diagnosis it is important to exclude other possible causes for the symptoms, such as multiple sclerosis, HIV/AIDS, cancer, lupus and celiac disease. The required testing depends on the symptoms of the individual.
Etiology
The cause of CFS/ME is not known and it is possible that there are several different causes. Most cases are thought to have an infectious origin. Especially enteroviruses and some herpesviruses have been implicated, but bacteria may also be involved in some cases.
Other suspected causes include chemical exposure, vaccinations, genetic vulnerability and adrenal insufficiency. CFS/ME is sometimes listed as an autoimmune disease, but there is no clear evidence of an autoimmune origin.
Thousands of studies have shown that CFS/ME is not a psychiatric or psychosomatic condition. It is not caused by depression, personality traits or "poor attitude". Psychiatric symptoms can occur, but are usually secondary to illness burden or neurological involvement.
Treatment
CFS/ME is usually a chronic condition, but far from untreatable, despite what some doctors claim. NMDA antagonists, anticonvulsants, stimulants and dozens of other medications can be helpful. Some cases may be curable with antibiotics and antivirals.
Graded exercise therapy (GET) is sometimes recommended as a treatment, but this erroneous recommendation is based on studies done on patients who had chronic fatigue, not CFS/ME. Exercise is not recommended for CFS/ME patients, unless they are only mildly ill.
The best way to avoid relapses is to avoid exessive exertion and stress. Many experts only recommend doing half of what you think you can do. It takes time to accept the limitations of your body, but it is crucial to avoid getting more ill.
References
Hyde B (ed). The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 1992.
Haavisto Maija. Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia. 2008.
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