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People with ME report experiencing clinically significant fatigue that lasts for longer than a few days and is unrelieved by rest or sleep. This exhaustion is different from the typical tiredness that many of us experience from time to time, and more like the type of intense exhaustion experienced by someone with a flu or mononucleosis.
The most distinctive symptom of ME is muscle fatigability (post-exertional muscle weakness lasting for days), but ME is also characterized by several neurological symptoms. These neurological symptoms can involve “cognitive, autonomic and sensory functions.” The condition is accompanied by a prolonged relapsing course, and is frequently triggered by physical and mental stress and intercurrent illness [1].
Some researchers and advocates have pushed to drop the “CFS” from the name chronic fatigue syndrome, in favor of the more accurate term myalgic encephalomyelitis. However, most healthcare systems, clinicians and charities still use the acronym ME/CFS.
ME is a complex illness that is difficult to define and treat, but it is a real, serious illness that can have devastating consequences. It can result in severe impairment of physical and cognitive function, with many individuals requiring full-time care, wheelchairs or speech aides. People with ME score significantly worse on quality-of-life surveys than people with conditions such as multiple sclerosis, stroke, heart disease and diabetes, even when they receive appropriate medical treatment.
Currently, there are no FDA-approved treatments for ME, but health care providers can recommend strategies such as “pacing” to avoid crashes; medication for pain and sleep; and accommodations in the workplace and at school. Many individuals with ME have found success in applying for disability, and obtaining assistance with housing and transportation.
The goal of this article is to provide information that can help families, friends and health care providers support and educate people with ME. Educators can help raise awareness of the disease, and encourage their students to support ME-related student activities. Patients can be empowered by learning as much as they can about their illness, and sharing this knowledge with others. And finally, caregivers can play an important role in ensuring that their loved ones are supported, and treated with respect.