The European ME Alliance - a Voice for ME in Europe
EMEA Newsletter November 2020
Welcome to the November 2020 Newsletter from the European ME Alliance (EMEA).
Following the recent EMEA 2020 Annual General Meeting a new Executive Committee has been formed and a renewed determination has been created to tackle issues regarding ME in Europe.
The Covid-19 pandemic has affected everyone and everything and as we deal with the effects on the lives of people in Europe we will use new opportunities to raise awareness of myalgic encephalomyelitis and provide solutions.
EMEA - A Voice in Europe for ME
Following the AGM EMEA has now also welcomed four new members and one new European country into EMEA.
The European ME Alliance now consists of ME charities and patient organisations in sixteen countries, with more considering joining.
Amongst the latest countries joining EMEA is Croatia. The ME Association in Croatia is a relatively new group but also a very crucial group in overcoming ignorance and apathy toward ME patients.
From Spain we welcome CONFESQ - COALICIÓN NACIONAL ENTIDADES.
Confesq is a coalition of organisations that is heavily involved in changing the situation for Spanish ME patients.
From the Netherlands we welcome ME-cvs association and ME/CVS Stichting (Foundation). In the Netherlands there is great promise of a new approach to ME with the national agency recently announcing a plan to increase funding of research into ME over the next ten years. Both new Dutch groups are working together in the official working group that is looking at research possibilities and discussing with academic and research organisations.
EMEA is stronger with our new colleagues.
Membership of EMEA is open to all groups sharing EMEA's ethos and willing to work together for the benefit of people with ME and their families.
EMEA Ongoing Work
EMEA has established a number of Working Groups to tackle different issues in Europe concerning ME and we have begun work already in some of these with more news coming soon.
EMEA members are also working on projects in their own countries and some of these are mentioned below.
EMEA Denmark (the Danish ME Association) won a prize last year to produce a short 3-min video.
ME-patient Helle, a former member of the EMEA Denmark board for 10 years, tells about her life today and how she fell ill with ME when she was young.
Also information on myalgic encephalomyelitis is given.
EMEA Finland (Suomen lääketieteellinen ME/CFS-yhdistys ry) has been involved in recent ME guidelines development that is being conducted by the Finnish agency Duodecim. The guidelines are scheduled to be published at the beginning of 2021.
Recently members of the European ME Alliance were invited to review the guidelines and participate in a review meeting with the Duodecim team.
EMEA Germany (Fatigatio e.V.) recently held its annual meeting and conference - this year in Hanover. The conference which was in German and English was made available over the internet. More details here.
EMEA Iceland (ME félag Íslands) is involved in campaigning for the rights of ME patients under the United Nations Convention on the Rights of Persons with Disabilities. The group is working with a human rights lawyer and the Alliance of Disabled People in Iceland. They are also involved in the EMEA Working Group on Human Rights and Disabilities
EMEA Ireland - The Irish ME Trust - is a member of the working group set up by the Irish Health Service Executive for the purpose of providing evidence based information to health and social care professionals to improve the care and management for people with ME, and to help develop formalised protocols for people living with ME.
As mentioned earlier members of EMEA Netherlands have been involved in the recent work conducted by the Netherlands Organisation for Health Research and Development (ZonMW) and a program meeting was recently arranged to discuss the research agenda. We are closely following developments here and look forward to the plan as it is developed
The European ME Research Group (EMERG)'s Dutch representative, Professor Aletta Kraneveld (from Utrecht University), is part of the steering committee of the research agenda. Professor Kraneveld chaired part of the meeting where international speakers were presenting.
Due to the ongoing Covid-19 pandemic this year EMEA Sweden ( Riksförbundet för ME-patienter (RME)) arranged a virtual conference that was held on 14 October.
The theme for the conference was "PEM - setbacks that define ME / CFS"
EMEA UK (Invest in ME Research) has rescheduled its annual international ME conference week to late May 2021 due to the Covid-19 situation.
The group has just signed a contract with the Quadram Instititue for funding of a major clinical trial for ME that has started at the Norwich Centre and involving university, university hospital and ME clinic, as well as other departments and organisations in Norwich Research Park. More news here
Following the recent NICE Draft Guidelines press release the charity responded with their own press release - see here.
EMEA has initiated a European Research group and a European Clinicians group in order to encourage research and clinical collaboration. We aim to build a coordinated strategy that will expedite discovery of treatments for ME and improve knowledge about the disease in medical establishments and agencies.
The European ME Alliance supports the European ME Research Group (EMERG) in building a strategy of high-quality biomedical research ito ME.
The EMERG group has discussed a number of possible lines of research and is currently working on the funding for a new multi-site project.
The European ME Alliance was recently able to provide funding for one of the EMERG research groups in Denmark. Read more here
EMEA and EFNA
EMEA is a member of EFNA (European Federation of Neurological Associations) and we are aiming to increase our collaboration within EFNA over the comming year.
In June EFNA released the results of their survey on Stigma and Neurological Disorder - click here.
Submissions from the ME community were on of the highest of categories of responses.
EFNA is currently running a "Me and My Brain" Art Competition
The winner can win up to €500. More details here