cost action ca15111

overview

ME/CFS, also known as post-viral/post-infectious fatigue syndrome (PIFS), effort syndrome, or systemic exertion intolerance disease (SEID), is a serious, chronic, complex, multisystem disease of unknown aetiology and pathogenesis that affects individuals of all ages and ethnic groups, and all socioeconomic strata.

It is characterised by profound fatigue, cognitive dysfunction, sleep disturbances, pain, post-exertional malaise, and autonomic manifestations, among other symptoms.

The symptoms vary in number, type and severity from person to person, and the course of disease is persistent or relapsing.

The disease most commonly occurs between the ages of 30 and 50, but affects all age groups from under 10s to over 70s, and the reported mean age of onset is 33 years. It is more often diagnosed in females. The prevalence of ME/CFS in the United Kingdom, Netherlands and Denmark is estimated to be 0.11 - 0.56%, as are the prevalence rates in USA, Australia and Japan.

By applying these prevalence rates to Europe, we find that 0.73 to 4.1 million individuals might have the disease, in this region. This is a relatively common illness, however there are many gaps in our research knowledge and several methodological problems to address.

ME/CFS is poorly understood by many clinicians, consequently, many patients are incorrectly diagnosed and poorly treated. Some patients suffer symptoms for many years before being properly diagnosed.

ME/CFS can be triggered by various infections, although the aetiology of ME/CFS remains unknown.

There is no cure for ME/CFS and therapies for symptom management have been showing no significant improvement.

Quality of life may be severely curtailed in ME/CFS, as with other chronic medical conditions. Around 25% of patients with ME/CFS have been bed-bound or house-bound during their disease