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What is ME?

Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.

It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.

Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion). It causes dysregulation of  the immune, nervous, and energy metabolism systems. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound.

All people with ME experience a substantial loss of physical or cognitive functioning, but there is a  spectrum of severity. The typical ME patient scores more poorly on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and various cancers. Onset can be either sudden or gradual, and the intensity or frequency of specific symptoms can wax and wane. While symptoms can fluctuate significantly from day-to-day, shifts in overall wellness should be measured in years, not weeks or months.

Prevalence

An estimated 15-30 million people around the world are suffering from ME including at least:

Symptoms

The hallmark symptom of ME is post-exertional malaise, a reduction in functioning and a severe worsening of symptoms after even minimal physical or cognitive exertion.

Other common symptoms include:

  • Sensitivity to light, sound or vibration, taste, odor or touch
  • Gastrointestinal symptoms such as nausea or abdominal pain
  • Muscle fatigability, weakness and fasciculation; poor coordination and ataxia
  • Autonomic and endocrine symptoms such as poor temperature regulation, cold or heat intolerance
  • Immune symptoms such as tender lymph nodes, recurrent sore throats, fevers, or flu-like symptoms, and new food or chemical sensitivities
Diagnosis

While there is no single laboratory test that can diagnose ME, patients have consistent biological abnormalities demonstrated in research settings. Many specialist physicians use these tests to aid in forming a diagnosis, although the diagnosis is at present most frequently made by excluding other conditions that cause similar symptoms and by using one of several diagnostic criteria. Due to lack of education and awareness about ME, many patients are undiagnosed, or misdiagnosed with other conditions.

Treatment

There is no approved treatments for ME. Because many ME patients’ symptoms vary over time, specialists often suggest treatments that are highly personalized and change treatment protocols frequently.

Video: Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome


Learn more about ME
About ME [USA]

I have ME. What’s Next?

#MEAction handout on the Diagnosis & Management of ME (2018)

ME in the news

Check out our curated list of in-depth features, TV reports and seminal articles and essay on myalgic encephalomyelitis and chronic fatigue syndrome.

Films, Books, Music About ME

From in-depth investigative journalism to personal storytelling, these films, books, podcasts, and other media are a great way to learn more about the experience of living with ME

#MEAction ME/CFS Research Summary (2017)


Resources

For patients and caregivers:

Diagnostic criteria & primers