Myalgic encephalomyelitis, also known as chronic fatigue syndrome (CFS), is a complex condition that affects multiple body systems. It can cause a wide range of symptoms, including unrefreshing sleep, cognitive problems and orthostatic intolerance (problems with balance). It may be mild or severe. People with ME/CFS score worse on quality of life surveys than those with depression or anxiety, cancer, heart disease, renal failure, lung disease and multiple sclerosis.
ME can start suddenly or develop more gradually. It often follows an infection, but not always. It can also appear after a surgical procedure, or after a large hormonal shift, such as pregnancy or menopause. It can happen in anyone, but it is more common in women than in men.
In the UK, the charity Action for ME estimates that 250,000 people have ME/CFS. For most people with the illness, it is the main reason they cannot work, and can have a serious impact on their social lives. The most common symptom is extreme tiredness, which can make it difficult to think and concentrate.
Other symptoms include pain, dizziness and near fainting, periods of bloating and constipation, problems regulating temperature, trouble with thinking or memory and poor balance and coordination. People with ME/CFS are more likely to be unable to work and less able to care for themselves than people with other health conditions.
It is not known what causes ME/CFS, but it is thought to be a combination of genetic and environmental factors. A new research project, DecodeME, is working to find out if genetic differences play a role.
Currently, there is no cure for ME/CFS, but treatments can help to manage symptoms and improve quality of life. These can include exercise, cognitive behavioural therapy and medicines to help with sleep, pain and other problems. Many patients find it helpful to keep a diary of their symptoms and take this to their GP so that they can be diagnosed earlier.
There is no test to diagnose ME, but doctors can be more sure of a diagnosis if other possible causes for the patient’s symptoms have been excluded. This is important because ME can be mistaken for other illnesses, and some doctors do not recognise it. Getting a diagnosis and accessing treatment is even more important for people living with the milder form of the illness, which can be difficult to identify. The charity Sense has published guidelines to support health professionals in diagnosing ME/CFS. It recommends that GPs ask patients about their fatigue and history of any symptoms, such as memory or concentration problems, and that they refer those with ME/CFS to specialists. It also recommends that health professionals look for evidence of underlying illness such as blood tests and MRI scans.