European ME Alliance Meets in European Parliament

Jo Best

Jo Best

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Meeting of European ME Alliance with Members of European Parliament March 2017

Beakfast in Brussels meeting 7th March 2017

https://twitter.com/i/web/status/838996392387432448

CARE4ME Conference 6th March 2017

https://twitter.com/i/web/status/838678835071762433

Extracts from original press release - http://www.euro-me.org/news-Q12017-002.htm

The European ME Alliance is a collaboration of 13 Myalgic Encephalomyelitis (ME) organisations in European countries who have the common aim of promoting biomedical research into Myalgic Encephalomyelitis and increasing awareness of this debilitating neurological disease.

Following months of planning EMEA is arranging a high-level meeting in the European Parliament on 7th March 2017.

The meeting will cover different topics that Members of the European Parliament ought to be aware of - including creating awareness on the quality of life and disability regarding people with ME.

An agenda has been created by EMEA in cooperation with Mrs Helga Stevens MEP.

The meeting will be held with breakfast and it is hoped that EMEA can begin the process of adjusting the perception, treatment and funding of research for myalgic encephalomyelitis within the political environment in the EU.

The meeting follows intensive work by EMEA members recently within Europe - having opened discussions with the WHO on ICD-11 and writing to the Danish Members of the Funktionelle Lidelser Working Group (click here).
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Jo Best

Jo Best

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slysaint said:
Also thanks @Jo Best. Any chance they might team up/collaborate with the OMF?
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Do you mean European ME Alliance (EMEA) or European Parliament? EMEA has good direct links with OMF via UK founding member org and Chair of EMEA, Invest in ME Research. :)
ETA: I was thinking mainly of the international conference/colloquium events but other member orgs of EMEA also have direct links with OMF I believe.
ETA more: EMERG (European ME Research Group) was formed by EMEA in 2015 and some of those researchers are also involved with Euromene, and in turn they meet together with the researchers from other countries around the world at the 2-day Biomedical Research Colloquium prior to the 1-day public Invest in ME Conference - www.investinme.eu
 
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Jo Best

Jo Best

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Jo Best said:
I'm assuming he was speaking in the context of his position on the United Nations Committee on the Rights of Persons with Disabilities (CRPD). I'm sure there'll be a report of the meeting in due course.
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At the Conference marking tenth anniversary of the adoption of the Convention on the Rights of Persons with Disabilities, States Parties elected today 9 new members to the UN Committee Rights of Persons with Disabilities (CRPD) for the term 2017-2020. The re-election of Dr. László Lovászy, Hungary’s candidate by the third largest number of votes is a great success; a recognition of his professionalism, enthusiasm and extensive knowledge of the field of disability issues.

The nine new members of the Committee, responsible for monitoring the implementation of laws and other measures to improve disability rights, and to abolish legislation and practices that discriminate against persons with disabilities, are the following: Dr. László Lovászy, (Hungary), Mr. Ahmad Alsaif (Saudi Arabia); Mr. Monthian Buntan (Thailand); Mr. Imed Eddine Chaker (Tunisia); Mr. Jun Ishikawa (Japan); Mr. Samuel Njuguna Kabue (Kenya); Mr. Robert George Martin (New Zealand); Mr. Martin Babu Mwesigwa (Uganda); and Mr. Valery Nikitich Rukhledev (Russian Federation).

Source: https://ensz-newyork.mfa.gov.hu/eng...-the-rights-of-persons-with-disabilities-crpd
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Jo Best

Jo Best

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English translation of facebook post by Danish politician Margrete Auken - original post here - https://www.facebook.com/margreteau...36730930417/10154385693190418/?type=3&theater
Have just been to the conference on "CFS" Myalgic Encephalomyelitis. It was shocking to hear how patients, and doctors who involve themselves with ME, are ignored and/or become marginalised. Is it the the old anti-feminine diagnosis "hysteria" that is at play? Why is the Health Ministry totally missing from this?
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Jo Best

Jo Best

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Posted in Invest in ME Facebook group: https://www.facebook.com/groups/5804522506/permalink/10154654997212507/

After the Invest in ME Research Colloquium and Conference events in London the charity will host the European ME Alliance (EMEA) AGM. This year there will be news of a new European member being added to EMEA.

After the great achievement from the Breakfast in Brussels meeting in the EU parliament (with EMEA Belgium organising this superbly) this further strengthens EMEA and will bring the group to a membership from 14 countries.
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