Is the New Name for ME/CFS Appropriate?

There is currently no universally effective treatment for ME, which makes finding a cure for this condition all the more challenging. Instead, doctors focus on addressing the symptoms and improving functioning in some patients. Different approaches are used by different countries, and ME is still not a well-understood disease. In addition to the lingering lack of an accurate diagnosis, ME patients have lower health-related quality of life scores than people with other chronic illnesses. Furthermore, about 25% of all ME patients are housebound.

A US Institute of Medicine report published in 2002 recommended a new name for ME and CFS, as well as a new clinical definition for SEID. While the recommendations were generally welcomed by medical journals, a recent academic study published by Sheffield Hallam University found that more than half the UK public did not accept the new name. The CDC website also contains information on where to seek help if your symptoms do not appear 50% of the time. But before we can determine whether the new name for ME/CFS is appropriate, it is crucial to understand its origin.

ME is also known as chronic fatigue syndrome (CFS) and has symptoms affecting various body systems. According to WHO, a majority of patients develop the illness following an infection. A recent study showed that approximately 15% of people who have a serious infection are affected by ME. The disorder is estimated to affect between 15 and 30 million people worldwide, and the prevalence is increasing worldwide. ME affects people from all walks of life and all socioeconomic groups. In fact, it is not known what causes ME, but the disorder is a common complication of infection.

A number of epidemiologic studies have attempted to determine the prevalence of ME/CFS. While the rate varies widely based on the population studied, and the criteria used to diagnose the disease, the estimated prevalence is about two to four cases per 1,000 adults. That means that if you have 10,000 patients and one is diagnosed with ME/CFS, you could expect to find 40 cases in that particular practice. Therefore, this disease is far more common in adults than in children, but the incidence rates in children are much lower.

The cause of ME/CFS remains a mystery, but studies show that a virus, a certain type of stress, or genetics may be involved. Infections like the Epstein-Barr virus and Q fever are often a trigger for ME/CFS. Interestingly, some patients begin with one level of disability and then move to another – a condition known as “fluctuating illness” – although this is extremely rare.