What is Myalgic Encephalomyelitis?

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Myalgic Encephalomyelitis (ME) is a chronic neurological disorder. It affects people of all ages and races, with a range of symptoms. People with ME are often housebound and have low health-related quality of life scores. Although the causes of the disease are unknown, researchers have shown that it has biological abnormalities. The condition is a chronic illness that presents as a gradual onset of symptoms, which can progress over years. This can cause a person to have significant loss of physical and/or cognitive function. There is no known cure for ME. However, treatments can help improve symptoms. Medications, assistive devices and psychological support can also be effective.

While there is no exact number of patients, it is estimated that one million Americans have ME. Most cases occur in adults, but it can also affect children. People with severe symptoms need around-the-clock care. Several medical centers have been funded to study the disease.

Patients with ME often have difficulty sleeping and have trouble concentrating. They may also experience pain, trouble regulating temperature and dizziness. Typically, ME is triggered by a serious infection, though it can happen on its own. Children can develop the condition as young as three months, while teenagers are often diagnosed at three to five years.

Because of the broad range of symptoms, it can be difficult to diagnose. For this reason, the diagnosis is based on several diagnostic criteria. One of the most important diagnostic criteria for ME is post-exertional malaise, or PEM. Symptoms of post-exertional malaise may appear immediately after physical activity or after reading or thinking. A more severe form of PEM can last for weeks. Another important symptom of ME is systemic exertion intolerance, or SEID, which is defined as an inability to perform normal daily activities, including walking and sitting. When SEID is left untreated, it can worsen and result in a permanent reduction of functioning.

ME is a difficult diagnosis to make because many health care providers do not recognize it. To avoid misdiagnosis, medical providers must exclude other diseases that are similar in symptoms. Other illnesses with similar symptoms include asthma, fibromyalgia, post-viral fatigue syndrome, and irritable bowel syndrome.

As the incidence of the disease increases, new diagnostic criteria are being developed. These criteria now require that a patient have a significant impairment in activity or cognitive function, along with other common symptoms such as post-exertional malaise.

Despite these improvements, ME remains a complex and poorly understood condition. This is due in part to the reliance on lax diagnostic criteria. Researchers have shown that the criteria can lead to misdiagnoses, leading to stigma and discrimination. In fact, nearly 90 percent of ME patients are incorrectly diagnosed.

ME is a life-altering illness, causing patients to experience a wide variety of symptoms, from physical to emotional. Fortunately, treatment strategies that are based on scientific research can improve symptoms and increase functioning in some patients. At the same time, patients are often sensitive to medications and need accommodations. Health care providers can also help patients apply for disability and provide other resources.