Getting the Right ME Diagnosis


Many people with ME find themselves struggling to get the right diagnosis and support. This is because the disease is poorly understood and misunderstood by medical professionals.

ME is a complex illness where extreme fatigue and other symptoms reduce your ability to function. These symptoms are not relieved by rest and they can be made worse by physical, mental or emotional exertion. No one knows what causes ME/CFS but it is not a result of poor health habits or depression.

Most people with ME can work but some cannot and may require around the clock care. On the worst days, three out of four people with ME are housebound or bedbound.

In most cases, people with ME appear to be in good physical condition and blood tests do not show anything out of the ordinary. However, this does not mean they aren’t sick.

The defining feature of ME is post-exertional malaise (PEM) – a global increase in symptoms after any type of exertion including physical, cognitive or emotional activity. The PEM can be triggered by even very mild activities like walking or reading and can last for up to 24 hours or more. Some people experience a temporary improvement of their symptoms in the days following activity, while others will relapse into a more severe state.

ME can be difficult to diagnose and it can take years to receive a correct diagnosis. This is because the symptoms are similar to many other diseases and can be caused by different conditions. This is why it is important for a doctor to rule out other illnesses before making a ME/CFS diagnosis.

A proper diagnosis of ME/CFS must be based on a patient’s history, clinical examination and pattern of symptoms. There is no specific laboratory test for the disease. Many patients are diagnosed with fibromyalgia, depression or anxiety when they should be evaluated for ME. This is because these conditions share some of the same features as ME/CFS, such as debilitating fatigue that does not improve with rest or worsens after activity and cognitive and physical exhaustion.

ME is an extremely serious and disabling disease that can affect anyone. It is estimated that there are over one million Americans living with ME. It is more common in women than men and can affect people of every racial, ethnic, and socioeconomic background. It is thought to be twice as common in adolescents and children as it is in adults.