EMEA NEWS

EMEA News for 12 May

Annually, May is International ME Awareness Month, and 12 May is celebrated as International Awareness Day for Myalgic Encephalomyelitis (ME, sometimes referred to as ME/CFS). To commemorate this occasion, the European ME Alliance (EMEA) and its members have produced videos below showing EMEA members talking about their experiences. with texts both in English and the native country’s language.
As a community of patient support groups, we are hosting events all over Europe to raise awareness of ME as a devastating disease, affecting millions of lives - missing from school, from work and from everyday activities. This is a direct result of the years of a lack of any strategy of biomedical research being employed to tackle ME by European governments.
There are some hopeful signs - such as the Dutch research programme that has recently been funded and is enabling good research to get underway. Also, work by EMEA in establishing European networks of researchers and clinicians (European ME Research Group (EMERG) and Young EMERG).

Despite being recognised as a disease of the neurological system by the World Health Organization since 1969, in some countries ME is still too often dismissed or prescribed treatments that can be harmful to patients (e.g. Cognitive Behavioural Therapy or Graded Exercise Therapy).
Decades of negligence and apathy have led to entrenched stigma about the disease and this consequently still affects clinical judgement leading all too often to patients being abandoned and denied a diagnosis and access to any hope of adequate medical, financial and social services.

The results from EMEA's EMEA A Pan-European ME Survey in which over 11,000 patients participated, confirmed that health care systems fail patients.

Based on our survey results and decades of lived patient experiences, EMEA is urgently calling for the actions below at the national and European levels:

Action 1

EMEA urges all European countries 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. It is imperative that all European governments swiftly adopt and implement WHO International Classification of Diseases (ICD) codes specific to ME/CFS within their healthcare systems.

Action 2

EMEA urges a pan-European strategy of coordinated, collaborative biomedical research to be initiated across Europe, by all governments, using established or developing Centres of Excellence for ME. These centres would be adequately funded and perform translational biomedical research that will look at developing a full understanding of the disease and development of effective treatments to mitigate or cure the disease.

Action 3

EMEA urges all European countries to take decisive action in establishing 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. Recognising the dangerously insufficient awareness and knowledge of ME/CFS, leading to misdiagnosis, missed diagnosis, or very late diagnosis (with an average delay of 6.8 years across Europe), concerted efforts are needed to include the latest scientific evidence on ME/CFS in medical curricula. Academic consultant roles specialising in ME/CFS would play a pivotal role in this effort, providing expertise and guidance to ensure the integration of ME/CFS education and research into medical curricula while utilising standardised diagnostic and treatment protocols for ME/CFS.

Action 4

EMEA urges the EU to initiate a pan-European effort to implement accurate and correct recording of cases of ME/CFS, utilising the most up-to-date diagnostic criteria. This is crucial for understanding the full economic burden of the disease. As demonstrated in previous EMEA 'ME/CFS in Europe' webinars, EMEA has highlighted the feasibility for all European countries to implement SNOMED CT to record properly occurrences of ME/CFS, facilitating accurate prevalence figures. EMEA welcomes the opportunity to collaborate with EU institutions, European governments, and other stakeholders, leveraging the data of the EMEA pan-European survey, to ensure a thorough evaluation of ME/CFS prevalence and its economic ramifications.