Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex neuroimmune illness that profoundly limits the health and well-being of patients. It is triggered by infections and has no known cure. It is believed that ME is a result of inflammation in the brain and body. It’s a disease that affects all age groups, including children and adolescents. It can impact any racial, ethnic or socioeconomic group.
The main symptom is feeling severely tired all the time. This can make it very difficult to function, both at home and at work. It can also cause other symptoms, such as aches and pains, difficulty with thinking and concentration, and memory issues. It can also lead to a lack of energy and motivation, referred to as “brain fog”.
People with ME often experience difficulties in the workplace and social environment due to the way they are treated by others. This can include being dismissed, not being taken seriously by friends or colleagues, and being viewed as lazy or a malingerer. ME/CFS can cause financial hardship, as many people cannot work full or part-time and may not be able to get a mortgage or car loan. This can also impact families and children.
It is not yet clear why some people get ME/CFS and are unable to recover fully, while others recover from it more quickly. There is evidence that a range of factors can influence this, such as trying to return to work too soon, doing vigorous exercise, or experiencing major stresses. It’s also thought that some people are genetically predisposed to it and could be more vulnerable to the infection.
Although ME is a serious illness, there is no test and the majority of people with it struggle for years to get diagnosed, are misdiagnosed, or told they don’t have the illness at all. This can be because ME/CFS can mimic other diseases and symptoms, such as fibromyalgia, postural orthostatic tachycardia syndrome (POTS, or increased heart rate upon standing), irritable bowel syndrome, Ehler’s Danlos Syndrome, or mast cell disorders.
Boothby O’Neill’s inquest heard that many NHS doctors have been taught that ME is a functional rather than physical illness. Campaigners want a radical reform of the NHS to ensure that ME/CFS patients are given access to local specialist services that are clinically led, with regional specialist centres for the most severe cases.