Myalgic encephalomyelitis, or ME/CFS (formerly known as chronic fatigue syndrome), is an illness that causes debilitating and persistent extreme fatigue that cannot be explained by other conditions. It can leave people housebound or bedbound, with the most severely affected needing around the clock care.
ME/CFS can appear to be a mystery to those who do not have the condition, and it can take a long time for patients to receive a diagnosis. There is no single test to diagnose ME/CFS and many doctors have not been trained to recognise the disorder, so patients are often misdiagnosed or not diagnosed at all. This can be particularly true for children and young adults, who may be told they are not sick.
Symptoms of ME/CFS include severe, unrefreshing fatigue that is not triggered by physical or mental exertion and doesn’t improve with rest, sleep or medication. Other symptoms can include cognitive problems such as difficulty thinking or memory loss, pain and tenderness in different parts of the body, muscle spasms or aches, postural orthostatic intolerance (a condition that causes people’s heart rate to increase when they stand up from lying down), gastrointestinal issues including bloating and constipation, sensitivity to light and sound, and a variety of other difficulties.
Most people with ME/CFS are not able to work full or part time and can find it very hard to get by financially. Families often have to rely on benefits and charity, and the disease can lead to a lack of social contact. One out of four people with ME/CFS are housebound or bedbound, and some require round the clock care.
There are no specific tests to diagnose ME/CFS and other illnesses that have similar symptoms, so doctors must assess a patient’s history and symptoms and rule out any diseases that could be causing them. Patients often have to wait a long time to receive a diagnosis, and as many as 90 percent of people who are ill with ME/CFS are not diagnosed or are misdiagnosed with another illness.
Those with ME/CFS can be extremely vulnerable to the effects of stress and depression. This is because the illness can cause a flare up of symptoms, or relapses, which can last for days or weeks.
ME/CFS is a complex, neuroimmune disease and there is no known cure or treatment. However, Solve ME/CFS works to accelerate the discovery of safe and effective ME treatments by growing and mobilizing a community of patients and allies and by advocating for increased funding of ME research.