Myalgic encephalomyelitis (ME) or, less frequently, chronic fatigue syndrome (CFS) is a long-term (chronic) illness with debilitating symptoms that affect different parts of the body. It is triggered by an infection but the cause is not known and there is no cure. Some people recover fully from ME and others improve to a greater or lesser degree over time but around one in four remain severely ill for many years.
Symptoms of ME are not always recognised and so patients often have to wait for years before they are diagnosed. This can lead to mistrust of health professionals and a lack of access to support and care for the whole family. It can also have a huge impact on their economic and social status, with some being forced to rely on welfare benefits or live in isolation from friends and family.
There is no single test for ME, and the symptom set is very similar to that of many other diseases so it can be difficult to diagnose. It is not clear what causes ME but it may be that a combination of factors is involved, including genetics and environmental influences. It is thought that emotional stressors can trigger ME but this has not been proven and it is very unlikely that any individual traumatic event, like bereavement, will cause ME.
Research is ongoing to try and understand what causes ME and how it develops. ME is thought to be an autoimmune condition where the immune system mistakenly attacks healthy cells. This is why it is important to maintain good hygiene, eat a balanced diet and exercise regularly.
It is also important to get enough sleep as this can help alleviate some of the symptoms. Many people with ME find that they can’t sleep as well as they would like, and they can wake up feeling drained or unrefreshed. This can be a particular problem during times of anxiety or depression as these conditions are common in people with ME.
There are a number of treatment options but no cure is available at present. These include cognitive behaviour therapy, medicines to ease pain and sleeping problems, pacing and energy management. Advice is also given to patients on how to manage their illness, and information is provided about local support groups.
If you have recently been diagnosed with ME/CFS, our booklet Newly Diagnosed has helpful facts and guidance to help you be an active partner in your healthcare, along with suggestions of questions to ask your GP. It also contains information on what support is available from local groups and Action for ME. Further information is also available on this website.