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What is ME?

Myalgic encephalomyelitis (ME) or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a complex chronic disease: it is ongoing, requires careful management, and presents with symptoms in multiple body systems.  ME is a neurological disease according to the World Health Organization. 

Susceptibility may be genetic, but the disease is triggered by infection up to 80% of the time.  ME may be severe: 75% of those affected are unable to work and 25% are homebound or bedridden. ME is also common, with ~12% of people with severe infection going on to develop the disease.


The cardinal symptom of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion.  PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting ~24 hours after the triggering event.  While PEM is often studied in relation to physical activity, cognitive overexertion or sensory overload may also initiate PEM.

People with ME experience a substantial loss of physical and/or cognitive function. The average person with ME scores as more disabled on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and cancer.  Someone with mild ME may be able to work full-time with accommodations; someone with very severe ME may be bedbound and have trouble communicating.

ME is a relapsing-remitting condition.  Individual patients experience significant fluctuations in their well-being from day to day, week to week, and month to month.

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 sets of diagnostic criteria. Due to lack of education and awareness about ME, many patients are undiagnosed or misdiagnosed with other conditions.

Treatment

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

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 Research Summary (2019)

Resources

For patients and caregivers:

Diagnostic criteria & primers