Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

European ME Alliance AGM

Discussion in 'General ME/CFS News' started by Sasha, Jun 4, 2016.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    15,193
    Likes:
    36,884
    UK
    The European ME Alliance AGM is today and is being hosted by Invest in ME (presumably in London) and that's the sum total of my knowledge on the subject!

    This is their website.

    Did you go, @Jonathan Edwards? Any excitement?
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member

    Messages:
    4,568
    Likes:
    23,132
    As far as I know this is an alliance of charities. I know nothing more either.
     
  3. Sasha

    Sasha Fine, thank you

    Messages:
    15,193
    Likes:
    36,884
    UK
    Thanks - I thought you went to last year's meeting but maybe I'm thinking of EMERG? Any excitement with them?
     
  4. charles shepherd

    charles shepherd Senior Member

    Messages:
    1,793
    Likes:
    11,251
    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 Jesus CASTRO-MARRERO
    Spain Dr Julià BLANCO
    United Kingdom Dr Eliana LACERDA
    United Kingdom Prof Derek PHEBY

    Country MC Substitute
    Germany Dr Madlen LÖBEL
    Norway Mr Babak ASADI-AZARBAIJANI
    Norway Dr Ingrid Bergliot HELLAND
    Spain Dr Jose ALEGRE-MARTIN
    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
     
    Last edited: Jun 4, 2016
    Sasha and Scarecrow like this.
  5. Sasha

    Sasha Fine, thank you

    Messages:
    15,193
    Likes:
    36,884
    UK
    Anything is possible! It was Euro-something. :)

    Hoping that one of these Euro-initiatives will start paying off...
     
  6. mango

    mango Senior Member

    Messages:
    793
    Likes:
    3,955
    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.)
     
    Jo Best, Justin30 and Sasha like this.
  7. Effi

    Effi Senior Member

    Messages:
    1,477
    Likes:
    4,431
    Europe
    I am baffled that Belgium is sending these BPS fanatics, when Germany is sending a big biomed name like Scheibenbogen. A strange mix to say the least. Not entirely sure I understand the purpose of this EUROMENE thing...
     

See more popular forum discussions.

Share This Page