ME is a common disease that affects more than 250,000 people in the UK and one million in the USA. It is a neurological condition and has no known cause or cure. It can be difficult to diagnose. Symptoms vary greatly from person to person and a diagnosis may take several years. The diagnosis is based on a combination of symptoms, medical history and physical tests.
Despite the best efforts of the medical community, the vast majority of people with ME are not diagnosed, misdiagnosed or simply dismissed as being healthy. As a result, many people with ME live with an inaccurate diagnosis for years or even decades.
It is important that patients have a diagnosis as soon as possible. It can make a big difference to how well you feel and how much support you can get. If you think you or someone you know has ME, talk to your doctor or contact a local ME organisation.
The condition is also often referred to as myalgic encephalomyelitis (M.E.) or chronic fatigue syndrome (CFS). These are the abbreviations for the disease and they are used in most countries to describe this disabling disorder.
ME/CFS is a complex and long-term disorder that affects the brain, muscles, digestive system, immune and cardiovascular systems. It affects people of all ages, ethnicities and socioeconomic backgrounds. It can make it hard for people to work, go to school and lead a normal life.
Treatment is focused on relieving symptoms and improving function. It can include medication, exercise and psychotherapy. Pacing, rest and self-care are the most important strategies for reducing the impact of symptoms on daily life.
Some people with ME experience a rapid relapse of their symptoms called a ‘PEM’ after activity. This can happen immediately after an intense session of activity, or more slowly over time as the disease progresses.
PEM can be triggered by physical activity, stress or anxiety, eating, drinking or sleeping. It can also be triggered by illness or infections. In particular, viruses such as glandular fever or Epstein-Barr virus are thought to trigger ME. However, other illnesses such as viral meningitis and labyrinthitis have also been linked to the development of ME/CFS.
It is also possible to have a relapse without any obvious cause. This can happen for weeks or months after a positive test and can have very severe symptoms and impacts on your quality of life.
The condition is caused by an inflammatory response in the central nervous system. This process can involve the brain or spinal cord, but it is not known whether this is the main reason for ME/CFS.
More research is needed to find out what causes ME/CFS and how it develops. Some studies suggest that some people may have different genes which mean they are more likely to be prone to developing this condition, and that the condition could be triggered by a particular infection. In addition, some people may have a ‘fluctuating illness’ where their symptoms are better and worse at different times.