Posted by TENA/DIAMOND on 3/3/2009, 5:54 pm
What is ME/CFS? #1
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ME/CFS is the acronym for Myalgic Encephalomyelitis or Myalgic Encephalopathy / Chronic Fatigue Syndrome, a condition that has never been properly named. The disease has had many names, including: post-viral fatigue syndrome, low natural killer cell disease, chronic Epstein-Barr virus syndrome, chronic fatigue and immune dysfunction syndrome (CFIDS), and the insulting Yuppie flu. (To learn more about this history, read “A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name” )
None of these names captures the diverse symptoms that people who suffer from this complex disorder experience. Yes, people with ME/CFS experience fatigue, but they are also prone to memory loss, cognitive functioning problems, sleep disturbances, headaches, depression, muscle and joint pains, low-grade fever and a multitude of other symptoms. Even the word fatigue does not accurately capture the debilitating nature of the exhaustion these people experience. Their fatigue is severe enough to significantly limit their ability to work, go to school, participate in social activities and take care of their personal needs - and is not relieved by bed rest or sleep.
While all diagnosed ME/CFS patients are “functionally impaired by definition,” according to the Centers for Disease Control, the CDC studies indicate the illness can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, chronic obstructive pulmonary disease, or end-stage (terminal) renal failure.
ME/CFS is also a relapsing, remitting illness that often follows a cyclical course. Typically the ME/CFS patient’s fatigue is made worse by either physical or mental activity, so that giving in to the temptation to overdo is repaid by “post-exertional malaise” (extreme, prolonged exhaustion and a worsening of symptoms following physical or mental exertion). The worse the illness, the less activity is possible. Indeed, the first means of testing objectively for ME/CFS may be a “Two-day Exercise Test” demonstrating diminished cardiopulmonary capacity in patients on the day following an initial exercise test.
Because of the difficulties surrounding the diagnosis of this condition, some physicians have suggested that the condition is imaginary or the result of depression or other mental disorder. Research, however, supports that ME/CFS is a real physiological condition that causes a substantial amount of suffering and is not a form of psychiatric illness or depression.
Symptoms
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The symptoms of ME/CFS are variable and unique to each sufferer. The overriding symptom is one of debilitating unexplained fatigue that lasts longer than six months. This fatigue significantly reduces activities of daily living including work, school, social, and personal activities. The fatigue is made worse by any exertion and not relieved by rest.
Other primary symptoms may include:
Post-exertional malaise lasting more than 24 hours.
Non-refreshing sleep and difficulties including insomnia and oversleeping.
Headaches of a new type or severity
Muscular pain, morning stiffness
Multi-joint pain (without redness or swelling)
Cervical (neck) or axillary (armpit) lymph node tenderness and swelling
Sore throat, chronic cough
Persistent low-grade fever
Problems with short-term memory or concentration.
Along with these primary symptoms, people with ME/CFS can also experience:
Gastric disturbances including irritable bowel syndrome, diarrhea, nausea.
Psychological problems, including depression, irritability, mood swings, anxiety, and panic attacks.
Night sweats.
Allergies or sensitivities to foods, odors, chemicals, medications or noise.
Some people have dizziness, dry eyes or mouth, earaches, irregular heartbeat, jaw pain, shortness of breath, and weight loss
(See Common Symptoms for more detail.)
Who is at Risk?
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Because ME/CFS is such a poorly understood condition, determining who is at risk for the illness is a difficult task. The Centers for Disease Control has estimated that more than one million Americans have ME/CFS according to the “Fukuda” diagnostic criteria developed in 1994, though they estimate that fewer than 20% of those with the illness have been diagnosed. They also estimate that 10 or 20 times as many people may have a condition similar to ME/CFS that doesn’t meet the strict requirements for diagnosis. Despite these problems with diagnosis, risk factors have been determined.
ME/CFS often appears to be triggered by a stressor of some sort, but this is not necessary. The apparent stressor is typically physiological, such as a viral infection/flu-like illness or toxic exposure, but may be a mental or physical trauma. The appearance of ME/CFS may follow the suspected trigger closely or be separated by many years.
You are more likely to have ME/CFS if you are an adult female (60% to 85% of diagnosed cases are women), however, men and children can also have it. The incidence of children and adolescents with ME/CFS is difficult to determine because until 2006 there was no pediatric case definition. (See “A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome” )
Interestingly, ME/CFS has occurred in large outbreaks, such as in a building or neighborhood. This has led a number of scientists to speculate that there may be an infectious cause, such as a virus, or an environmental component, such as toxic exposure, but this has yet to be proven.
In addition, there may be a genetic dimension to the risk of developing ME/CFS. Ongoing genomic research has identified 88 genes whose expression differs significantly in ME/CFS patients by comparison with normal controls, as well as seven likely genomic subtypes characterized by different constellations of symptoms and levels of severity.
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