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European ME Alliance AGM

charles shepherd

Senior Member
Are you thinking of EUROMENE? - an initiative aimed at improving European research co-operation and collaboration.

EUROMENE involves several UK doctors - Eliana Lacerda, Luis Nacul, Derek Pheby - who were involved with the ME Observatory and are now involved with the ME Biobank and Jonathan Edwards:

CA COST Action CA15111European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE)
Descriptions are provided by the Actions directly via e-COST.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - ME/CFS - is a disabling condition of unknown aetiology that affects individuals of all ages. Disease is causing significant social and economic burden.

While there have been research efforts in the last 20 years on ME/CFS, they still remain rather fragmented, and there is clearly lack of coordination of European research on the topic. Action will provide clear benefits via coordination of‚ research activities, support to development of common standards, database synchronisation, and promotion of‚ new research projects in the area.‚ Data depositories harmonisation and data collection protocol synchronisation can greatly improve use of existing data, including Open data sources, and allow the development of coherent research strategies.

Innovation will benefit from coordination of introduction of new technologies in this research area, experience on novel data analysis approaches, patient stratification and synergistic approach to existing data. All this will be supporting the development of translational platforms, which have a long-term potential of new product development addressing the challenge.

Early Carrier investigators will receive a special training package built on training schools, training workshops, clinical research introduction, STSMs. Researchers with high potential from other areas will enrich their scientific focus by interaction on events and obtaining dissemination materials produced by the Action. Inclusiveness countries will get special supportive measures, as many of them still lack streamlined research agendas on ME/CFS.

Management committee and participants:

CA COST Action CA15111Management Committee
MC Chair Prof Modra MUROVSKA (LV)
MC Vice Chair Dr Eliana LACERDA (UK)

Prof Mira MEEUS
Belgium Dr Els TOBBACK
Bulgaria Prof Evelina SHIKOVA-LEKOVA
France Prof Jérôme AUTHIER
Germany Prof Carmen SCHEIBENBOGEN
Germany Prof Thomas HARRER
Italy Dr Lorenzo LORUSSO
Italy Prof Enrica CAPELLI
Latvia Dr Uldis BERKIS
Norway Prof Anne Marit MENGSHOEL
Norway Dr Elin B STRAND
Romania Dr Magdalena BUDISTEANU
Romania Dr Carmen Adella SIRBU
Serbia Dr Slobodan SEKULIC
Spain Dr Julià BLANCO
United Kingdom Dr Eliana LACERDA
United Kingdom Prof Derek PHEBY

Country MC Substitute
Germany Dr Madlen LÖBEL
Norway Dr Ingrid Bergliot HELLAND
Spain Prof Jordi MIRÓ
United Kingdom Prof Jonathan EDWARDS
United Kingdom Dr Luis NACUL

COST Near Neighbour Countries
Institution Name MC Observer
Republican Research & Practical Center for Epidemiology & Microbiology (RRPCEM) ■
Dr Svetlana Orlova
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Senior Member
Yes, EMEA had a meeting today. I haven't heard anything yet about how it went or what they discussed.

(I've asked a question through the RME representative: will they send in comments in reply to NIH's RFI? Don't know if they had time to talk about it today.)