FAQ
Myalgic Encephalomyelitis
Frequently Asked Questions
Frequently Asked Questions
Q. What is M.E.?
A. Myalgic Encephalomyelitis is a severe, complex neurological disease that affects all body systems. Over time and in different countries, many names have been associated with the condition; please see A Short History of Myalgic Encephalomyelitis for further details.
Myalgic “my-AL-jik” means muscle pain. Encephalomyelitis “en-SEF-uh-lo-MY-uh-LY-tis” means inflammation of the brain and spinal cord.
Q. What causes M.E.?
A. The cause is as yet unclear but onset is linked in most cases to an acute infection, although some people experience a slow, insidious onset.
Q. What are the symptoms?
A. A disabling exercise-induced muscle fatigue, muscle weakness and pain, often severe ‘flu-like’ malaise, along with an abnormal exhaustion unrelieved by sleep. There are also various symptoms which indicate a disturbance in brain function, including loss of concentration and short-term memory, dyslexia, nausea, clumsiness and disturbed balance, sensitivity to light and other problems with vision, sensitivity to noise, misjudgement of distance, and sometimes problems with bladder control and bowel disturbance. Patients may experience emotional symptoms including depression and mood swings, which can confuse diagnosis in the absence of clinical signs. You will find more detailed information in The Symptoms of Myalgic Encephalomyelitis.
Q. How is M.E. diagnosed?
A. Diagnosing M.E. is difficult as there is no diagnostic test and a number of the symptoms are similar to those present in other illnesses. Currently, a diagnosis is made through a process of elimination, i.e. your doctor will assess your medical history, recognise the typical symptom pattern of M.E. and conduct basic tests, for example on blood or urine samples, to rule out other conditions. For further information please see Myalgic Encephalomyelitis: Diagnosis, Management & Prognosis.
Q. What is the prognosis?
A. The outcome in any particular case is difficult to predict. Some sufferers will improve slowly and may make a full recovery, although the process may take several years and be punctuated by periods of relapse. Others make variable progress, with fluctuating levels of disability and never achieve full recovery, although there is usually substantial improvement over the years. A significant minority remain severely disabled, making little or no progress, and a smaller number steadily deteriorate, becoming chair or bed-bound for much of the time.
Q. Do symptoms vary from day to day?
A. The disease is a naturally fluctuating one. There may be periods during which a severely affected patient will have intermittent walking ability. They may be able to cover a certain limited distance on any one day. On the whole, however, such efforts cannot be sustained without ill effects which are slow to dissipate. Patients are advised to live well within the limitation of the illness. A Self-Help Guide to Managing Myalgic Encephalomyelitis provides clear and enlightening information.
Q. Is M.E. a new illness?
A. M.E. is not a new illness, since medical literature from the earliest times appears to describe the same disease process. However, its incidence does appear to have increased over the last fifty years.
Q. Who gets M.E.?
A. Onset most often occurs between the ages of 20 and 40, but it can affect anyone, regardless of age or social status.
Q. How prevalent is M.E.?
A. Recent data suggest that there are over 250,000 people in England and Wales with M.E., with about 2.4 times as many women affected as men, and as many as 17–24 million people worldwide.
Q. Is there a cure for M E.?
A. There is no cure and treatments aimed at various symptoms may help some patients, but not others. The patients who make the most significant improvement appear to be those who were diagnosed at an early stage, and took adequate rest during the acute stage of the illness and during relapse.
Q. What is the cost of M.E.?
A. The cost is incalculable. There is the cost to the country in lost skills and productivity. There is the cost of benefits, of medical consultation, tests and treatment. Most of all, there is the human cost of shattered lives, lost careers, lost independence, both financial and personal, and the corrosive effect on relationships of disbelief in an illness which is neither understood nor fully accepted. International M.E. Awareness Day is held every year to raise awareness of Myalgic Encephalomyelitis.
Q. What is M.E. Support?
A. M.E. Support is a long-established website, founded by Myalgic Encephalomyelitis advocate Louise Sargent, committed to improving the understanding of M.E. and providing vital support.