I am a person who has an illness called myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). ME affects the brain, muscles, digestive system, immune system and cardiac system. It is a neurological disease classified by the World Health Organization as a chronic disorder. It is estimated that between 0.4-1% of the population has ME.
ME is a complex illness that causes significant physical and cognitive impairments, often leaving people with ME housebound or bedridden. It affects men and women of all ages, ethnicities and socioeconomic backgrounds. It is a serious condition that costs the US economy $17 to $24 billion annually in medical bills and lost income.
The disease may start suddenly or gradually over a period of months or years. It may appear following a viral infection in most cases, but it can develop without any specific trigger in some people.
Symptoms vary from person to person, but many people with ME experience fatigue, muscle pain, trouble sleeping and cognitive problems. They also sometimes have periods of bloating and constipation, problems regulating temperature and trouble concentrating.
In addition to the primary symptoms, patients may have one or more secondary illnesses (comorbidities). These include fibromyalgia, postural orthostatic tachycardia syndrome, gastroparesis, Ehlers-Danlos Syndrome and mast cell disorders.
Some people with ME also have a mental health illness, including anxiety and depression. This does not mean that ME is a mental health problem in and of itself, but it can make the symptoms worse.
The most common symptom of ME is post-exertional malaise (PEM), which can appear as soon as activity is started, but sometimes it can be delayed by a few days or weeks. PEM can be triggered by simple activities, such as walking or brushing your teeth, but it can also be a result of mental or emotional stress.
Other symptoms of ME are dizziness, weakness and fatigue. These can be severe enough to make it hard to walk, drive or work. They can also cause sleep problems, such as waking up frequently throughout the night and having trouble falling asleep.
ME is a serious, lifelong illness that can have a dramatic impact on your quality of life. Most people with ME experience a level of disability that is higher than those with other illnesses like multiple sclerosis, stroke, heart disease or diabetes.
It can make it difficult to do everyday tasks and it can affect your relationships with friends, family and work colleagues. It can also cause a lack of confidence and self-esteem.
There is no cure for ME/CFS, but research has found links between genetics, the central nervous system and immune and metabolic factors. Scientists are working to understand these connections and to develop diagnostic tests and treatments.