ME – What is It?

When a person has ME, their brain and spinal cord are affected. They are unwell in many different ways and may experience a wide range of symptoms. It is a neurological disease that affects all body systems and is triggered by infections. The cause of ME is not yet understood and there is no cure or diagnostic test. People with ME may struggle for years to receive a correct diagnosis and can be misdiagnosed or told they do not have the illness. This is because extreme fatigue is a common symptom of many conditions and is often mistaken for “normal” tiredness or caused by lack of exercise.

ME has been found world-wide in epidemic and sporadic forms since the 1930s, with at least 75 documented outbreaks in published papers. It has been known by several names including atypical poliomyelitis, epidemic neuromyasthenia, Akureyri disease, Tapanui flu, chronic fatigue immune dysfunction syndrome, low natural killer syndrome and systemic exertion intolerance disease.

ME can be very severe and impact the lives of many people. In some cases, people are unable to work or require around the clock care. One out of four people with ME are housebound or bedbound on their worst days.

It is thought to be a genetically predisposed illness and people of all races, ages, socioeconomic levels and gender are at risk for developing ME. ME can be triggered by many infections such as the common cold, influenza, meningitis and gastroenteritis. It can also be triggered by vaccinations and certain medications including antibiotics, corticosteroids and anti-depressants.

There is no cure or treatment for ME and patients are often left feeling extremely sick for long periods of time with little understanding or support from their medical professionals. It is estimated that 90% of people with ME have not been diagnosed and/or misdiagnosed and are often told they do not have the disease.

It is thought that ME is a multi-factorial disorder with both neurological and metabolic involvement. It is not a psychiatric disorder and the condition is not caused by lack of exercise, which has been a commonly held misconception in the past. The most recent research reveals that inflammation in the brain is part of the explanation for ME, but more work needs to be done to understand this in detail. People with ME often have comorbid diseases, such as fibromyalgia (widespread muscle pain and unrefreshing sleep), postural orthostatic tachycardia syndrome (POTS, increased heart rate upon standing) and gastroparesis/irritable bowel syndrome (bloating and constipation). This is called a triad of symptoms. These conditions are all linked and must be treated simultaneously to help manage the ME.