The European ME Alliance is a grouping of European organisations who are involved in supporting patients suffering from myalgic encephalomyelitis (ME or ME/CFS) and are campaigning for funding for biomedical research to provide treatments and cures for ME.
The alliance was formed in 2008 by national charities and organisations in Europe.
The Alliance now has representatives from Belgium, Croatia, Denmark, Finland, France, Germany, Iceland, Ireland, Italy, Netherlands, Norway, Serbia, Slovenia, Spain, Sweden, Switzerland and the UK.
ME/CFS is a debilitating neurological illness classified as such by the World Health Organisation under ICD-10 G93.3.
Our aim is to campaign for appropriate funding of biomedical research into ME/CFS to establish an understanding of the aetiology, pathogenesis and epidemiology of the disease. This should lead to the development of treatments to cure or alleviate the effects of the illness.
The objectives of the European ME Alliance is to provide a correct and consistent view of myalgic encephalomyelitis (ME/CFS) for healthcare organisations, healthcare professionals, government organisations, the media and patients and the public.
Our web site will consist of accurate descriptions of the illness and details of research which has or is taking place.
The member groups in the alliance will be working together to promote awareness of ME/CFS and will work closely with organisations and researchers who are interested in finding treatments and cures for ME/CFS.
The members of the European ME Alliance have agreed to accept and abide by a Charter of Principles (see here) and these consist of the following - .
- That members of the European ME Alliance will ensure that EMEA’s news, resources and opportunities are disseminated within their organisations.
- That members of the European ME Alliance will work in a collaborative, non-competitive and respectful spirit as a network of organisations representing those affected by myalgic encephalomyelitis.
- That members of the European ME Alliance will work in accordance with EMEA’s values, and within the framework of EMEA’s policies and procedures.
- That members of the European ME Alliance endorse modern diagnostic criteria for myalgic encephalomyelitis. A list of the currently favoured criteria will be listed on the Alliance’s web site.
- That members of the European ME Alliance endorse the UN Convention on the Rights of Persons with Disabilities.
- That members of the European ME Alliance promote the fact that myalgic encephalomyelitis is a neurological illness and listed at 8E49 of the World Health Organisation Index of ICD-11.
- That members of the European ME Alliance refer to myalgic encephalomyelitis as ME until evidence-based research causes that to change. However, the Alliance understands the practical necessity to use the composite term ME/CFS in some circumstances for ease of reference/standardisation.
- That members of the European ME Alliance support biomedical research into myalgic encephalomyelitis that will lead to treatments and cures for this illness.
- That members of the European ME Alliance do not support promotion of any product or therapy for myalgic encephalomyelitis that has no acceptable evidence base and where the Alliance believes such product or therapy would be deleterious to the health of myalgic encephalomyelitis patients.
- That members of the European ME Alliance do not support the prescribing of cognitive behaviour therapy (CBT) or Grade Exercise Treatment (GET) as treatments for myalgic encephalomyelitis.
- That members of the European ME Alliance acknowledge the effect that myalgic encephalomyelitis has on individuals, their family and/or carers, and on relationships in general. As in other serious physical illnesses, EMEA recognises that people with myalgic encephalomyelitis may also require appropriate social, financial, physical and psychological support to manage their condition.
- That members of the European ME Alliance have, as an objective, the preparation and promotion of a common set of documentation and terminology regarding myalgic encephalomyelitis, in all languages of Alliance members, for Alliance use and supplemented by local information. Members of the European ME Alliance will use this common set of documentation as a standard.
- That members of the European ME Alliance will work to eliminate the stigmas associated with myalgic encephalomyelitis, especially the misconception that it is a psychological illness rather than a biological one, which leads to trivialisation of the illness, missed or mis-diagnoses, and missed or non-treatment of those affected.
- That members of the European ME Alliance will work to protect patients who are too ill to defend themselves. They will engage in initiatives to increase awareness and understanding of myalgic encephalomyelitis, to set up inter- and multidisciplinary collaboration among different partners (researchers, clinicians, care facilities, patients, family, policymakers, etc.).
- That members of the European ME Alliance will advocate for health authorities to provide appropriate and timely care at all levels, even at home, as well as research and training for everyone involved with myalgic encephalomyelitis patients in order to improve, to the extent possible, the lives of people living with myalgic encephalomyelitis.
- That members of the European ME Alliance support the work of the European ME Research Group (EMERG) in developing a strategy of high-quality biomedical research into myalgic encephalomyelitis with a collaborative, pan-European approach.
- That members of the European ME Alliance support the work of the European ME Clinicians Council (EMECC) in developing and improving clinical expertise in Europe with a collaborative, pan-European approach.
Members of EMEA are shown in this sliding representation. Click on the country of interest to read more.
The constitution of the European ME Alliance is available here.
All members of EMEA have agreed to this constitution.
United Nations Convention on Rights of Persons with Disabilities (UNCRPD)
All members of the European ME Alliance endorse the UN Convention on the Rights of Persons with Disabilities.
This endorsement is via our Constitution which refers to all members agreeing to abide by our EMEA Membership Charter of Principles
The UNCRPD can be found here.
Human rights are an important part of EMEA’s work.
Human rights violations can negatively impact Myalgic Encephalomyelitis and the lives of people living with the disease and its disabilities.
The European ME Alliance’s work is underlined and guided by the UN Convention on the Rights of Persons with Disabilities (UN CRPD) which states that people with disabilities, including people with physical disabilities due to illness must fully enjoy their human rights.
EMEA will work together with the European Disability Forum to monitor the implementation of the UN CRPD by the EU, to make sure European policies reflect and respect the obligations which the EU signed up to when it ratified the Convention in 2010 and the recommendations it received from the UN Committee on the Rights of Persons with Disabilities in September 2015.
- UN CRPD (https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html
- Optional Protocol: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/optional-protocol-to-the-convention-on-the-rights-of-persons-with-disabilities.html) and
- The European Disability Forum (http://www.edf-feph.org/)
The members of the European ME Alliance are keen to obtain support from all organisations supporting the EMEA Constitution and the EMEA
Charter of Principles mentioned above.
To apply for membership please
use the Membership Application form here to apply for membership.
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No medical recommendations are given or implied.
Please consult your own medical practitioner for the treatment of your personal symptoms.