ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) is a highly misunderstood condition that is characterized by a range of neurological, endocrine and immune disturbances, often (but not always) accompanied by profound fatigue and exhaustion – with loss of muscle power, pain, tenderness and cognitive dysfunction following normal physical or mental activity. Myalgic encephalomyelitis is classified as a neurological disorder by the World Health Organization (International Classification of Disease 10: G93.3).
Affecting all social classes and ethnic backgrounds, estimates are that between 0.2% and 0.4% of the population has the illness. It can occur at any age with the greatest incidence being between the early twenties and mid forties. Women are most commonly affected. Sufferers are estimated to number at least 1 million Americans and 17 million worldwide. A 1999 study estimated 800,000 Americans have the illness; but this figure is likely to be much higher now.
Often sufferers are unable to work, with 25% acutely disabled. Many are wheelchair-bound, housebound, bed bound and tube-fed. It impacts severely on the lives of sufferers and caregivers. Very little support is available and isolation and loss of hope often follow years of suffering.
It most commonly occurs in a sporadic form but there have been epidemic cases, such as the outbreak in the Royal Free Hospital, London, 1955 and Incline Village, Nevada, in the early ’80′s.
No universal cure or treatment has, as yet, been found. A handful of physicians stay updated on the latest research findings and have formed treatments that have benefited many with a few going into remission. Yet, relapse is common and some will live the rest of their lives severely limited by their symptoms.
ME/CFS drains $18 billion to $23 billion annually from the US economy. Finding a cure will turn these disabled people into more productive citizens, which will, of course, benefit the patients themselves, as well as tax payers and business owners alike.
A British study showed ME/CFS is the most common reason for long-term absenteeism from school.