I am someone who lives with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS). It is a complex neurological condition that affects mainly adults, but may also affect children. It is a lifelong illness with no cure and has serious effects on people’s physical and mental health.
The symptoms of ME vary between people. Some people get ME suddenly after a viral infection, while others develop it gradually over months or years. It is not known what causes ME but it is thought to be a combination of genetic, central nervous system and immune factors.
Symptoms of ME include fatigue, pain, sleep problems and cognitive impairment. These symptoms are often worse after physical activity or exercise.
Fatigue and other symptoms can be so severe that they make it difficult to perform even basic activities of daily living. Some people are unable to work, while others need around the clock care at home or in a hospital.
Other common symptoms of ME are trouble concentrating, unrefreshing or disturbed sleep, muscle or joint pain, dizziness, near fainting and problems regulating body temperature. ME can be triggered by a bacterial or viral infection, such as herpesviruses and enteroviruses. It is thought that a person’s risk of developing ME is influenced by their immune system, and research is ongoing to identify the cause.
It can also be triggered by a major life event, such as the birth of a child or an important medical procedure. It can occur alongside other conditions, such as fibromyalgia or chronic fatigue syndrome.
Symptoms of ME may be severe, but it is possible to manage them. Managing your symptoms can help reduce your physical and emotional stress levels. Pacing your activity and resting are key to reducing the severity of your symptoms.
You may need help to find the best way to manage your symptoms. Your GP or specialist team can advise you on this. They can also refer you to a specialist ME team.
The symptom that is most important to your doctor is the level of energy you have. Your doctor will want to know if you have ever been feeling completely exhausted, or have felt exhausted for longer than you should have.
Most people with ME are able to cope with everyday activities if they stay healthy and active. But if they do not, the symptoms can become more severe and they may need extra help to do their usual activities.
If you are struggling to live with the symptoms of ME and need advice on how to manage them, ask your GP for a referral to a specialist team who can diagnose you and provide you with information on treatment options. You should also be referred to an independent support group for people with ME, as well as to your local disability services agency for additional support.
The UK government’s National Institute for Health and Care Excellence (NICE) recently released a clinical guideline that aims to improve the care and support people with ME receive from the NHS and other healthcare services. This document is free to download and will give patients, carers and families all the information they need about symptom recognition, diagnosis, management and the ongoing care and support that should be available. It is recommended that you read it before your first appointment with a health professional.