Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a complex illness where extreme fatigue and other symptoms reduce your ability to function. Doctors don’t understand what causes ME/CFS but they can suggest treatment strategies that can help you feel better.
ME/CFS is a neurological condition that affects the brain, muscles, immune and digestive systems. It can be so debilitating that people are often bedbound and unable to work or study. It is a long-term condition and there’s no cure yet.
The most common symptom is feeling extremely tired, even after rest or not being active. But there are many other symptoms including:
Unlike most illnesses, ME/CFS doesn’t improve with time or with medication. It is a persistent, disabling condition that can have a significant impact on relationships, work and health. It affects men and women of all ages from all backgrounds and can be found in people of all socioeconomic groups. It is estimated that between 0.4-1% of the population has ME/CFS, and it is more common in women than in men.
It is estimated that over 2 million adults in the UK live with ME/CFS, and that the number is rising. However, not all healthcare professionals have adequate knowledge about the condition, and many people do not receive a correct diagnosis or appropriate management.
The ME Association has produced this clinical guideline to ensure that healthcare professionals have the knowledge and skills they need to recognise, diagnose and manage ME/CFS. It outlines the NICE guidelines for ME/CFS and highlights the ongoing care and support that people with ME/CFS need.
A diagnosis of ME/CFS is not easy to make and can take months or even years to be confirmed. This is because many doctors do not have the training or experience to recognise the disorder. The ME Association is working hard to improve awareness and education of this enigmatic condition.
The cause of ME/CFS is unknown but it may be triggered by certain infections. This includes glandular fever, Epstein-Barr virus infectious mononucleosis and herpes viruses HHV-6 and VZV (which cause chickenpox and shingles) and the Ross River virus in Australia. Some studies have also suggested a genetic link to ME/CFS.
People with ME/CFS frequently have a history of other conditions such as fibromyalgia, irritable bowel syndrome and psychiatric disorders. These comorbidities can contribute to the severity of ME/CFS symptoms and can worsen the condition’s impact on a person’s quality of life. It is therefore important for ME/CFS to be recognised and treated alongside these other conditions.
It is recommended that patients with ME/CFS are referred to an ME/CFS specialist team to confirm the diagnosis and develop a personalised care and support plan. These teams should be multidisciplinary and include healthcare professionals from a range of specialisms including rheumatology, rehabilitation medicine, endocrinology, neurology, infectious diseases, paediatrics and general practice. They should have access to ME/CFS-specific allied healthcare professionals such as exercise physiologists, occupational therapists and clinical or counselling psychologists.