Specific Objectives

To define a standardized clinical diagnosis for ME/CFS for clinicians and researchers

that allows the identification of relatively homogenous sets of patients, who can be studied to identify pathogenesis mechanisms, biomarkers and disease process in a stratified way, as well as to be compared with other researched populations.

To synchronise diagnostic criteria and manage research on ME/CFS subgroups using molecular, serological, neurobiological and physiological markers integrating GWAS and Gene Expression Analysis to identify and understand the biological disease pathways in a stratified way.

To foster development of prevention and treatment guidelines, introduction of patient-centered QOL outcomes, assess the cost-effectiveness of treatments and the role of comorbidities in clinical and real-life settings.

To coordinate efforts to determine the social impact of ME/CFS and to appraise the economic damage from the disease.

To establish communication links with industrial organisations

especially small/medium-sized enterprise (SMEs), for example in the pharmaceutical, biotechnology and ICT industries in each participating country to develop collaborative research and innovation proposals. A special working group will work on innovation aspects and information exchange on technology transfer capabilities and give inputs to research projects from other programmes. The Action will coordinate an epidemiological overview on ME/CFS in Europe, identification of potential biomarkers, standardization of diagnosis, and evaluation of socio-economic impacts. These will be summarized and reflected by collaborations through scientific meetings, workshops, conferences, training schools, joint publications, and dissemination activities.

Specific objectives

Research Coordination Objectives

The strategic objective of the Action is to create an integrated network of researchers on ME/CFS in Europe and beyond.

The network will promote multidisciplinarity in ME/CFS research and foster a full chain of translational research to further
develop much-needed treatment and prevention strategies for improvement of patients’ quality of
life.

To develop strategies to collect population-based data on the prevalence of ME/CFS,

according to site; and developing a geographical mapping of ME/CFS epidemiology involving correlations with other mapped information.

To develop recommendations on inclusion of fMRI, SPECT and other structural and functional neuroimaging technology data to understand the nature and extent of neuropathologic involvement in ME/CFS. To exchange information facilitating the development of synchronised adequate local systems for the collection, storage, and cataloguing of biological samples for research purposes, establishment of central laboratories among the network.

To establish a network-wide WEB-based information platform for researchers and practitioners, designed to facilitate basic scientific and clinical research into ME/CFS, with a potential to include clinical and demographic details of people with ME/CFS attending collaborating institutions or participating in studies and to establish appropriate quality control mechanisms to ensure the validity of data and conforming with ethical and regulatory approvals.

To promote co-operation and involvement of research groups

with an objective to assess potential biomarkers for ME/CFS capable to evaluation of various infections and immunological disorders as causal factors or comorbidities.
To coordinate usage of innovative high-throughput technologies (genomic, epigenomic, transcriptomic, proteomic, and metabolomic strategies) for new biomarker recognition and distribution of the experience and optimal practice for assays and newly proposed biomarker validation.