People with ME are unique and so are the experiences of their illness. Some ME patients make very good progress and recover to a large extent over time, while others remain severely ill for years. Doctors who specialise in ME believe that sub-groups exist within the ME patient population on the basis of differences in illness history and course, as well as the presence of other illnesses (called comorbidities) such as fibromyalgia, postural orthostatic tachycardia syndrome (POTS, increased heart rate upon standing), secondary depression and gastroparesis/irritable bowel syndrome.
The symptoms of ME are wide ranging and can include pain, fatigue, sleep problems, cognitive difficulties, gastrointestinal upsets and muscle spasms. People with ME also experience post-exertional malaise (PEM), a sudden worsening of symptoms following even minimal physical or cognitive exertion. It is not possible to test for ME and a diagnosis is usually made by ruling out other conditions that cause similar symptoms and by using one of several sets of diagnostic criteria.
ME is a complex and multi-faceted condition that affects all body systems, but most commonly the nervous and immune system. People with ME are unable to work full or part-time and often require round the clock care. The illness can be debilitating and one in four people with ME are housebound or bedbound.
The causes of ME are unknown and it is often triggered by an infection. It is thought that ME may be a neuroimmune disease whereby the brain and central nervous system are attacked by the body’s own immune defence mechanisms. There is no cure for ME and it can be lifelong. However, there are strategies such as pacing, exercise and dietary interventions that can help some people avoid crashing.
Research into ME is ongoing and it is hoped that one day there will be a test to diagnose the illness. However, the most promising approach at present is to identify genes that are influencing the sensitivity of some people to ME. This will involve taking a sample of cells from the body and testing them for genes that are associated with ME.
ME is a highly stigmatised illness and many people feel isolated and lonely with this condition. This is particularly true of young people with ME who are at an age when their friends are starting to leave home and start their own lives. The inquest of the death of Maeve Boothby O’Neill who had ME in 2021 highlighted poor NHS support for people with the condition and has prompted calls for urgent changes to improve services.