May 2024
Dear MEPs/Candidates,
The European ME Alliance (EMEA) is reaching out to you amidst the upcoming EU elections.
On behalf of people affected by myalgic encephalomyelitis (ME, also referred to as ME/CFS) in Europe we are asking if you will support
our initiatives regarding ME/CFS in Europe, if elected as an MEP.
EMEA is a grouping of European organisations representing people with myalgic encephalomyelitis (ME, sometimes referred to as ME/CFS)
in Europe. EMEA campaigns for adequate funding for biomedical research to provide treatments and cures for ME/CFS.
Together with the European Federation of Neurological Associations (EFNA), our united mission is to elevate the importance of neurological
conditions and brain health, advocating for those affected by neurological conditions across the European Union - specifically the under-researched and devastating disease of ME/CFS.
With this letter we kindly request that you to:
• Support the European ME Alliance initiatives and proposals to improve the way that ME/CFS is researched, treated and perceived throughout
all countries in the EU, and throughout Europe as a whole - and respond to this letter (mailto:info@europeanmealliance.org) so that we can
encourage the millions of citizens in Europe who are affected by this debilitating disease, including our members, to vote for you following a
commitment to support them
• Please inform us if you are willing to sign the MEP Pledge for Brain Health and Neurological Conditions, 2024-2029, which includes a
commitment to becoming, or remaining, a member of the MEP Interest Group on Brain Health
and Neurological Conditions: www.efna.net/bhnc/#1708358723883-5970ecbd-6d45
Below are the EMEA proposals for ME/CFS at the National and European level.
ME/CFS has been recognised by the World Health Organization as a neurological condition since 1969, under ICD-10 G93.3 and ICD-11 8E49.
Despite this, it is not recognised in some European countries and in others it is falsely believed to be a psychological
illness, which it is not.
As a Pan-European patient organisation, EMEA has established a strong network of European researchers and clinicians with
the European ME Research Group (EMERG) that has the experience and capability to tackle ME/CFS, if provided with the
necessary research funding. EMEA has also established a European Young/Early-career Researcher network (Young EMERG) to
generate interest and collaboration between future leaders and researchers in Europe.
We support the annual Invest in ME Research International ME Research Conference where researchers, clinicians, and patients
from around the world can gather to learn and share best practices and the most recent advances in research.
The results of our recent EMEA Pan-European ME Patient Survey, completed by over 11,000 participants (patients and carers), reveal profound disability levels and unmet needs among European ME/CFS patients. This highlights the urgent necessity for healthcare systems to acknowledge ME/CFS as a severe physical illness and enhance medical care, financial support, and social services, and pursue a fully funded long-term strategy EMEA of biomedical research into this disease.
A summary of the survey findings and information about the survey exists on our website in various languages - via this link.
Therefore, we are asking for your support at the EU and national level to:
- Take immediate action in addressing Myalgic Encephalomyelitis and recognise ME/CFS as a somatic illness, as defined by the World Health Organization (WHO). ME/CFS requires standardised diagnosis and treatment protocols, as well as early diagnosis to improve outcomes. It is imperative that all European governments swiftly adopt and implement the WHO International Classification of Diseases (ICD) codes specific to ME/CFS within their healthcare systems. We encourage the use of SNOMED criteria to establish disease prevalence, which is currently unknown, with an average prevalence rate of 0.2-0.4% possibly the most common reference estimate.
- Develop a comprehensive Pan-European strategy of coordinated, collaborative biomedical research to be initiated across Europe, by all governments, using established - or developing new - Centres of Excellence for ME. Provide these centres with much-needed funding for translational biomedical research to establish an understanding of the aetiology, pathogenesis, and epidemiology of ME/CFS, leading to improved diagnostics, symptom management and efficacious interventions to prevent or cure the disease.
- Include the latest scientific evidence on ME/CFS in medical curricula because awareness and knowledge of the disease is dangerously insufficient, leading to no diagnosis, mis-diagnosis, or very late diagnosis (average of 6.8 years across Europe).
- Establish a specialist discipline for ME/CFS by creating academic consultant roles dedicated to ME/CFS and establishing at least one specialist clinical centre aligned with centres of excellence.
- Protect patients’ human rights, which are often violated because their disability is invisible, and ensure they are not marginalized and receive timely physical and medical care, financial support, and social services, which they are often denied due to a lack of a diagnosis.
As a Pan-European patient organisation, EMEA has done its part and established a foundation of European researchers and clinicians ready to tackle ME/CFS, if provided with the necessary research funding.
Now it is time for the EU and national governments to act and we respectfully request your support!
Please click the box on the right to return an email to us if you agree to pledge suppport for ME/CFS
Support of the EFNA EU Manifesto
EMEA is also a Board Member of the European Federation of Neurological Associations (EFNA), and support their EU Election Manifesto that outlines key actions we believe are essential for advancing neurological health in the EU.
Neurodegenerative disorders include Myalgic Encephalomyelitis (ME or ME/CFS), Alzheimer's and Parkinson's disease, cerebrovascular diseases including stroke, neurodevelopmental disorders including ADHD and autism, as well as known diseases such as migraine and epilepsy, and many rare and neglected diseases.
Collectively, they represent the most significant health challenges within the EU, affecting millions with their wide-ranging effects on individuals' lives and placing a substantial burden on our healthcare systems. Despite this, the attention and resources allocated to neurological health remain insufficient.
We invite you and all MEP candidates to review and sign the MEP Pledge for Brain Health and Neurological Conditions, 2024-2029 -
www.efna.net/bhnc/#1708358723883-5970ecbd-6d45 – thus demonstrating
your commitment to: -
- Enhancing research and development in the field of neurology
- Ensuring equitable access to treatment and care for neurological patients
- Promoting patient-centred healthcare policies
Your support for these initiatives will be instrumental in bringing about the necessary change, as well as offering hope and improved quality of life to millions of people living with neurological conditions in the EU – including those affected by ME/CFS.
We look forward to the possibility of your support and to discuss further ways in which we can collaborate on this critical issue.
Thank you for considering our appeal.
Together, we can make a significant impact on the lives of those affected by ME/CFS and all neurological conditions.
Sincerely,
The European ME Alliance Executive Committee
On behalf of all of our members below:
https://europeanmealliance.org/groupmembers.shtml
