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Europe: European ME Alliance (EMEA) (also EMECC and EMERG)

Discussion in 'News from Organisations' started by Andy, Jan 18, 2019.

  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Note from Moderators:
    IiME created the EMEA, and also the EMECC (Clinicians Council) and the EMERG (Research Group). The EMEA is a member of EFNA (the European Federation of Neurological Associations).

    A number of threads have been merged to create this thread.
    ********************





    Invest in ME announce the formation of the European ME Clinicians Council

    Screen Shot 2019-01-18 at 13.59.32.png
    http://investinme.org/IIMER-Newslet-190102EMECC.shtml
     
    Last edited by a moderator: Oct 17, 2021
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  2. Hutan

    Hutan Moderator Staff Member

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    I think this idea deserves more attention. Thanks to @obeat for highlighting it on another thread as an idea that could be adopted in other regions. It would be good to hear more about the American group and the proposed European group.


    @Medfeb, @RoseE
     
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  3. Andy

    Andy Committee Member (& Outreach when energy allows)

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  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    My reservation is that this has already been going for for some time under the auspices of EUROMENE. IiME were certainly helpful in getting researchers together over the last ten years. But the EUROMENE group has been around a good while and became an active enterprise with the EU COST grant awarded to Uldis Berkis. Over the last two years clinicians throughout Europe have been collaborating on pretty much every aspect of ME, producing guidelines and recommendations. I do not see a need for an additional organisation.

    There is also the problem that organisations with names like 'Clinician Council' inevitably attract people who talk a lot and want to be important. The great thing about EUROMENE is that it is pretty much free of that because it is just trying to get a job done.
     
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  5. Trish

    Trish Moderator Staff Member

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    This is very confusing.

    So there is EUROMENE, The European ME Alliance (EMEA) and now EMECC.
    This seems counterproductive in an environment where there is so little good research and clinical care for ME. Surely a single organisation would be better.
     
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  6. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Fatigatio symposium in Stuttgart, August 2019


    Details, in German, can be seen here, https://www.fatigatio.de/cfs-me-fachtagung-2019-des-fatigatio-ev/

    From the English language conference flyer, http://euro-me.org/documents/Documents-DE/Fatigatio 2019_fachtagungsflyer_EN.pdf
    The slides of the presentation from EMEA can be seen at this link, http://euro-me.org/documents/Conferences/EMEA-Stuttgart-August-20194.pdf
     
    Last edited by a moderator: Oct 17, 2021
  7. Trish

    Trish Moderator Staff Member

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    I am confused. Is this different from the EUROMENE? And which are the 2 UK organisations is involved?

    From the slides, there are 3 separate groupings within this organisation:
    Patients: EMEA European ME Alliance
    Clinicians: EMECC European ME Clinicians Council
    Researchers: EMERG European ME Research Group
     
  8. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Yes, it is different from EUROMENE. The two UK organisations involved in EMEA are IiME and Hope 4 ME & Fibro NI.
     
  9. strategist

    strategist Senior Member (Voting Rights)

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  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    http://www.investinme.org/IIMER-Newslet-191001EMERGEMECC.shtml

    can't find any dates.
     
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    http://europeanmealliance.org/news-Q12020-001.shtml
     
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  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    taken from Anils FB page

    Study among ME / CFS patients on COVID-19; a response to the design of the study

    Google translation of the piece by Lou Corsius

    https://t.co/oO8Ie7GRkq
    @Grigor
     
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  13. Andy

    Andy Committee Member (& Outreach when energy allows)

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    A roundtable of European Stakeholders and Policymakers, 9th June 2021

    "Following joint planning sessions EMEA and EFNA (European Federation of Neurological Associations) are arranging a multi-stakeholder, roundtable meeting on Myalgic Encephalomyelitis (ME/CFS) in Europe.

    The meeting will bring together a variety of initial stakeholders in Europe, including clinicians, researchers, policymakers, industry and patient representatives from EMEA's members, in order to create a better understanding of the many unmet needs and the devastating impact of ME/CFS on patients and families across generations.

    The meeting will also include discussions on the implications of Long COVID - including similarities to ME/CFS."

    ....

    "The roundtable will establish a forum that will form the basis for initiatives to be developed and maintained in the future by highlighting opportunities and solutions on how to fill the gaps in research, treatment and perception of ME and how to build the necessary infrastructure to make sustained progress and improve patients’ lives.

    The forum is planned to be an ongoing event allowing more informed opinion about the disease to be created and solutions to be initiated as we build up the stakeholder group."

    https://europeanmealliance.org/meineurt.shtml

     
    Last edited by a moderator: Oct 17, 2021
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  14. Andy

    Andy Committee Member (& Outreach when energy allows)

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    I don't know how the stakeholders are selected or can apply but @Michiel Tack , it would be good to see the European ME Coalition as part of this, and @cassava7 , is there any French group that could take part?
     
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  15. cassava7

    cassava7 Senior Member (Voting Rights)

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    As far as I know, ASFC (the national association) is part of EMEA but they are inactive there. It seems that they do not have enough resources to focus on international advocacy efforts. I can't speak for Millions Missing France but they are much more involved in advocacy -- including internationally, their open letter last year is a good example -- so if they could be put in touch with EMEA, I think they would be happy to consider participating.
     
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  16. Andy

    Andy Committee Member (& Outreach when energy allows)

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    A thread on the EMEA Pan-European Survey is here.
     
    Last edited by a moderator: Oct 17, 2021
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  17. Wyva

    Wyva Senior Member (Voting Rights)

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  18. Wyva

    Wyva Senior Member (Voting Rights)

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  19. strategist

    strategist Senior Member (Voting Rights)

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    Last edited by a moderator: Jun 11, 2021
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  20. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Live tweets on twitter
     
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