TY - CONF
T1 - European network on myalgic encephalomyelitis/chronic fatigue syndrome – EUROMENE
AU - Murovska, Modra
AU - Berķis, Uldis
AU - Krūmiņa, Angelika
AU - Ivanovs, Andrejs
AU - Lunga, Asja
AU - Araja, Diana
AU - Nora-Krūkle, Zaiga
AU - Rasa-Dzelzkaleja, Santa
AU - Svirskis, Simons
PY - 2021/3/24
Y1 - 2021/3/24
N2 - Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a frequent and severe chronic disease drastically impairing life quality. Research on ME/CFS in Europe is characterized by the absence of a collaborative approach between research centers, therefore there was a clear need to create a sustainable multidisciplinary integrated network of researchers in Europe working in this field to address the research challenges arising from unknown etiology, clinical variability, lack of diagnostic biomarkers and limited treatment options, high associated socio-economic burden. 22 countries are participating in the EUROMENE network: Austria, Belarus, Belgium, Bulgaria, Denmark, Finland, France, Ireland, Italy, Germany, Greece, Latvia, Netherlands, Norway, Rumania, Poland, Portugal, Serbia, Slovenia, Spain, Sweden, and UK. The Action activities were organized in six working groups: on epidemiology; biomarkers; clinical research; socio-economic; conferences, seminars and training schools; dissemination and exploitation. During the Network we assessed the current research and clinical practices on ME/CFS and produced a set of recommendations for enhancing research and health care, considering the additional need of multi-sectorial integrated actions – including the Education, Work and Pensions, and Social Services sectors. We considered the simplicity and ease of access of the suggested tools in the recommendations. Because these tools are currently used in Europe, this would facilitate the participating countries to adopt the recommendations. This will enable users to synchronize diagnosis and identification of ME/CFS cases, data collection, and input of data and samples relating to ME/CFS research harmonization. By doing so, it will be possible to create an international database for collecting consistent and comparable epidemiological data to further facilitate scientific and clinical research, assess burden of disease. 13 joint publications are published in Open Access journals, “Recommendations for a public health European-wide approach” has been developed” targeted to politicians, health policy makers, professionals/medical doctors, researchers, NGOs, including patients’ organizations, and to the general public.
AB - Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a frequent and severe chronic disease drastically impairing life quality. Research on ME/CFS in Europe is characterized by the absence of a collaborative approach between research centers, therefore there was a clear need to create a sustainable multidisciplinary integrated network of researchers in Europe working in this field to address the research challenges arising from unknown etiology, clinical variability, lack of diagnostic biomarkers and limited treatment options, high associated socio-economic burden. 22 countries are participating in the EUROMENE network: Austria, Belarus, Belgium, Bulgaria, Denmark, Finland, France, Ireland, Italy, Germany, Greece, Latvia, Netherlands, Norway, Rumania, Poland, Portugal, Serbia, Slovenia, Spain, Sweden, and UK. The Action activities were organized in six working groups: on epidemiology; biomarkers; clinical research; socio-economic; conferences, seminars and training schools; dissemination and exploitation. During the Network we assessed the current research and clinical practices on ME/CFS and produced a set of recommendations for enhancing research and health care, considering the additional need of multi-sectorial integrated actions – including the Education, Work and Pensions, and Social Services sectors. We considered the simplicity and ease of access of the suggested tools in the recommendations. Because these tools are currently used in Europe, this would facilitate the participating countries to adopt the recommendations. This will enable users to synchronize diagnosis and identification of ME/CFS cases, data collection, and input of data and samples relating to ME/CFS research harmonization. By doing so, it will be possible to create an international database for collecting consistent and comparable epidemiological data to further facilitate scientific and clinical research, assess burden of disease. 13 joint publications are published in Open Access journals, “Recommendations for a public health European-wide approach” has been developed” targeted to politicians, health policy makers, professionals/medical doctors, researchers, NGOs, including patients’ organizations, and to the general public.
M3 - Abstract
SP - 311
T2 - RSU Research week 2021: Knowledge for Use in Practice
Y2 - 24 March 2021 through 26 March 2021
ER -