description of the cost action

Description of the Challenge (Main Aim)

The main objective of the Action is the establishment of a sustainable integrated network of
researchers in Europe working in the field of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(ME/CFS), this way tackling the research challenges arising from unknown aetiology, clinical
variability, lack of diagnostic biomarkers and limited treatment options, high associated socioeconomic
burden. The network will be built on principles of multidisciplinarity, patient and
stakeholder involvement, strategic coordination with multiple sectors (researchers, clinicians, and
industry looking for translational platforms for new treatment development), attraction of early
career investigators, involvement of COST countries and Near Neighbour Countries, and fostering
of international cooperation.
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%, similar to that in USA, Australia and Japan. If this prevalence is similar throughout
Europe, an estimated 0.73 to 4.1 million individuals are affected by this condition 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,
and, as a result, 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 not been
fully evaluated. ME/CFS is a complex, heterogeneous condition that comprises the interaction of
different biological, physical and psychosocial mechanisms. Analysis of the interaction between
these pathways is important for improving understanding of the disease.
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.
A significant economic burden is caused by medical costs and patients’ loss of ability to work;
clinically-characterised disease is associated with a low probability of recovery and a high degree
of debilitation, and clinical practitioners tend to “write-off” patients at the early stages due to a poor
understanding and limited knowledge of treatment options. In the absence of a cure, therapies
including Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) have been
proposed but not fully evaluated. It is necessary to find the causes, mechanisms of development
and progression of ME/CFS, and based on this knowledge, to define biomarkers and develop
treatments for this disease. Moreover, health care providers must be better educated about
ME/CFS to allow for identification of patients presenting with it.