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Management Structures And PROCEDURES

The basic underlying document is the “Rules for Participation in and Implementation of COST Activities”. Accordingly, the Management Committee (MC) will coordinate and monitor the Action, meet all strategic decisions, approve annual reports. At the kick-off meeting the MC members will elect the Chair (AC), Vice-chair, WG leaders and Task Coordinators (TCs). MC will approve the monitoring reports and approve annual work plans at the meetings; MC will meet twice per year. The internal decision-making process of MC will follow the Rules of Procedure for Management Committee. The STSM and Training School Coordinator (STC) will guide especially ECIs from resource-limited countries to locate the optimal training and development possibilities among the network; organize the Training Schools and STSMs, solve practical issues. The Core Group (CG) will include the AC, Vice-chair, the WG leaders and TCs. The Dissemination Coordinator (DC) will oversee and monitor dissemination and publicity. CG will meet twice per year, and additionally consult via teleconference as necessary. CG will be involved in practical management of activities.


Network as a whole

The Network will share long-term research experience on ME/CFS, including epidemiology, biobanking, molecular biology, immunology, clinical research, diagnosis, treatment and research on social aspects in ME/CFS. It must be noted that with the increasing burden of ME/CFS the national/supranational funders have become more willing to support research projects and the Action will be able to build on the finished and ongoing research in the area. The Action will present a network of participating countries, some with globally-recognised expertise in ME/CFS research and some - beginners in this field. The network will share an experience in Europe on ME/CFS epidemiology and psycho-socio-functional status of patients, creation and maintenance of biobanks (blood and tissue), neurological aspects of the disease and for high-throughput search for suitable biomarkers, participation in the International Consensus Panel to develop ME/CFS International Consensus Criteria and International Consensus Primer for medical practitioners, immunological aspects of the disease as well as on search for infectious agents triggering the disease development. A heavy focus is on expertise in biochemical and immunological characteristics of the disease as well as investigation of associated diseases and symptoms. The consortium will cover strong expertise in molecular biology and laboratory diagnostics, in clinical microbiology, immunology and molecular biology, especially in the development of new methods for diagnosis and best expertise in all aspects of immunology and immunomodulation. In general, network builders represent expertise in all necessary aspects to fulfil defined tasks and to reach stated aim. The Network will provide gender balance. Networking activities will involve senior researchers to provide age balance. The inclusiveness countries’ researchers will be supported especially by dedicated measures towards existing collaborative partnerships. The collaboration resulting from this Action will strengthen the already existing collaborations and lead to new interdisciplinary networking on topics which currently are disadvantaged by absent or low level communication. This Action will provide the opportunity to expand collaborations by the provision of meetings and trainings. As a result, the establishment of new contacts is expected with teams working in other disciplines or using different methodologies. Interactions and scientific knowledge exchanges during workshops, seminars and training schools will facilitate new collaborative networks and research axis. As a consequence, new excellent projects will be developed.

DELIVERABLES

Slides presented by Dr. Eliana Lacerda in the IACFS-ME Conference in Fort-Lauderdale

EUROMENE Coast Action presentation
Added value and impact of proposing a COST Action

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Existing disease-specific bio-resources within the European Network on ME/CFS (EUROMENE)

Deliverable 2
Survey for capacity development target groups: PhD students/candidates, ECIs, young principal investigators, researchers, clinicians, health policy makers

Deliverable 10