Myalgic Encephalomyelitis (ME), also known as ME/CFS (Chronic Fatigue Syndrome), is a long-term, complex illness that affects multiple systems in the body. The World Health Organization classifies ME as a neurological condition.
Although the exact cause is not fully understood, many people develop ME after a viral or bacterial infection. Genetics may also play a role in who is more at risk. For many, the illness is life-changing: around three-quarters of people with ME cannot work, and roughly one in four are housebound or bedbound. Globally, it is estimated that between 15 and 30 million people are living with this condition.
Key Symptom
The main feature of ME is something called post-exertional malaise (PEM). This means that even small amounts of physical or mental activity can trigger a severe worsening of symptoms, often appearing a day later. PEM can be set off not just by exercise, but also by concentration, stress, or sensory overload.
Symptoms
While PEM is the hallmark symptom, many others are common, including:
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Problems staying upright (orthostatic intolerance)
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Unrefreshing or poor-quality sleep
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Muscle and joint pain
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New or worsening headaches
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“Brain fog”: memory problems, word-finding difficulties, confusion
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Sensitivity to light, sound, touch, smell, or vibration
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Digestive issues such as nausea or stomach pain
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Muscle weakness, tremors, and poor coordination
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Problems regulating body temperature, sensitivity to heat or cold
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Frequent sore throats, swollen lymph nodes, flu-like symptoms
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New food or chemical sensitivities
Daily Impact
ME drastically reduces quality of life. On average, people with ME score lower on health and disability surveys than those with illnesses such as multiple sclerosis, diabetes, heart failure, or cancer. While some people with mild ME may be able to continue working with adjustments, those with severe ME may be bedbound and struggle with basic communication.
Because ME is a relapsing and remitting condition, symptoms can fluctuate from day to day or week to week, making it unpredictable and difficult to manage.
Prevalence
It’s estimated that:
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1,000,000 people in the United States have ME/CFS
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250,000 in the UK
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100,000 in Australia
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560,000 in Canada
Most people affected are women (about 75–85%), and up to 90% remain undiagnosed due to lack of awareness and understanding.
Diagnosis & Treatment
Currently, there is no single test for ME. Diagnosis usually involves ruling out other conditions and applying established clinical criteria. Research does show consistent biological abnormalities in people with ME, but these are not yet widely used in standard healthcare settings. Because of this, many people remain undiagnosed or are misdiagnosed.
At present, there is no approved cure or treatment for ME. Management focuses on symptom relief and energy conservation, often using highly personalized strategies depending on the individual’s needs and the severity of their illness.