What is Myalgic Encephalomyelitis (ME) Or Chronic Fatigue Syndrome (CFS)?

Myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS), is an illness with extreme tiredness and other symptoms. It doesn’t improve with rest or sleep and it doesn’t have a specific cause.

ME is a complex condition that affects different body systems and can have a wide range of symptoms. The hallmark symptom is post-exertional malaise – a worsening of symptoms that can last for days, weeks or permanently. This occurs after physical, mental or emotional exertion that wouldn’t have caused problems before the ME/CFS onset. It can be triggered by a variety of things including physical, cognitive and emotional activity as well as sensory overload like light or sound.

Research is ongoing into what causes ME/CFS but it isn’t known if there is a single underlying cause. Viruses are thought to play a role, but it isn’t yet known how and when people become affected. There are some researchers who believe that problems generating and using energy may be a key factor. People with ME/CFS often experience poorer health-related quality of life than healthy people and have lower functioning levels than those with rheumatoid arthritis, multiple sclerosis, depression or heart failure. Around 75% of people with ME are unable to work and 25% are bedbound.

While there’s no cure for ME/CFS, you can learn how to manage your symptoms and increase your functioning. There are also support groups for ME/CFS that can help you to make friends, get advice and access services. Action for ME and ALISS can signpost you to local groups.

Many of the people who have ME/CFS feel frustrated, angry and lonely. They feel that the illness holds them back from doing things they want and need to do, such as being with family and friends or working in a job that fits their skills and abilities. This can lead to low mood, anxiety and even depression.

The main treatment for ME/CFS is to avoid activity that triggers a PEM episode and to use pacing strategies. It’s also important to have good sleep hygiene and to try to eat a nutritious diet and maintain a healthy weight.

Using online resources and apps, such as ME/CFS management tools, can be useful. It’s also a good idea to talk to your doctor about your feelings and find out what treatments are available for you.

A new clinical guideline from NICE has been produced that explains how to identify ME/CFS and what care and support you should expect. The ME Association fully supports this guidance and is working with the NHS to ensure that it is implemented effectively. You can download the guidance here.