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. - 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 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.
Added value of networking
In
order to undertake collaborative research on ME/CFS, a
collaborative network involvingresearchers, clinicians and patient organizations will be established in Action. The network will facilitate communications between participants, enabling them to develop collaborative research at an international level, and proposals to accomplish the development of a series of infrastructure facilities, including a database containing clinical and demographic details of people with ME/CFS, taking into account the scientific and regulatory challenges to establish a tissue sample bank. The initial phase of the proposed Action will coordinate the data gathering on existing ME/CFS related clinical and scientific databases and their characteristics, such as inclusion criteria, data items collected, date of origin, number of cases, primary purpose (e.g. to support clinical work, clinical audit, or research), whether single centre-based or multicentre, whether population-based, whether based in primary, secondary or tertiary care, status (pilot or definitive application), uses to which the data are put, and access provisions. The synchronisation efforts will coordinate the ethical and legal framework within which the database operates. This part of the Action will facilitate a feasibility study of the construction of a common database and standard selection. This will coordinate whether such a facility can be constructed on the basis of existing databases, or would have to be an entirely new development. Following these initial phases, a WEB-based network platform, which will aim at inclusiveness, will be established. This will require the prior development of a template, in order to systematise the admission of patients to the database. This will be facilitated by the knowledge exchange strategy, which will enable the best experiences of operating existing databases to be shared and how these could be merged into one synchronised template.
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.(ME/CFS)
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Relevance and timeliness
It is crucial to establish the prevalence of this condition to estimate the economic impact acrossEurope, which is currently largely hidden. Multidisciplinary approaches to the management of
ME/CFS using a bio-psychosocial model of rehabilitation (CBT and GET) provide modest benefit to
functioning at best; despite this, these therapies have been increasingly recommended as
treatments.
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Innovation in tackling the challenge
There is a clear need for a major effort to integrate molecular, behavioral, nutritional, clinical, social and environmental epidemiology data
encompassing exposure data from occupational studies, supplying novel genetic, epigenetic, phenotypic and imaging data in a major European ME/CFS study, with the clear purpose of better understanding ME/CFS, and to open the possibility of Europe-wide translational research on ME/CFS, integrating synergistically the national efforts with a major H2020 initiative. The primary contribution to innovation will be the coordination of an effort on the employment of new technologies, big data, digitalisation in patient management, new basic science contributions such as protein-protein and protein-carbohydrate interaction studies, and novel visualisation methods..Description of the state-of-the-art
Research on ME/CFS in Europe is characterised by the absence of a collaborative approach between research centres, whereas at the national level research and health services provision are usually concentrated in few centres of competence. Research efforts in the field have been restricted to some disease-specific calls from funding agencies (mainly in the UK). Consequently, they have been very fragmented, with sub-priorities (e.g. viral, immunological and environmental) determined by organisational affiliations and funding programmes. Therefore a major and concerted effort is crucial in order to align biobanks and bioinformatics platforms and to attain conformity in biomarker sets. Tissue samples are scarce. New frontiers of biomedical research are hindered by the absence of validated animal models. Imaging data consists mainly of MRI and unspecific findings (e.g., Evans index abnormalities). Only a small number of PET studies for neuro-inflammation have been completed.1
Clinical practice involves unspecific
ailments, alternative pathways, and competing nosological
entities.
2
A large number of diverse causative factors
e.g. viral infection, immune activation, exposure to toxins, chemicals, and pesticides, low intensity radiation and EM fields - have been suggested as aetiological factors (multifactorial disease). Altered gene expression profiles in ME and CFS patient populations have been reported. Pathways of disease development involve metabolic dysregulation as a chronic pathological state. Mitochondrial dysfunction also has been proposed for ME/CFS. Similarity to the pathways observed in ageing with mitochondrial (SOD, GPx) and cellular enzyme (catalase) concentration and/or decrease in activity could explain the similarity with ageing processes