The European ME Alliance is a collaboration of non-profit making, non-commercial, politically independent and non-denominational European ME organisations who have the aim of improving the situation for people with ME/CFS in Europe and ensuring that they are able to obtain a full quality of life with appropriate healthcare and research into the disease.
The Alliance aims to raise awareness of myalgic encephalomyelitis among the public, the professions, the academic community, the business community and politicians.
The European ME Alliance gives a voice for people with ME in Europe and is the European partner for facilitating high-quality biomedical research into Myalgic Encephalomyelitis.
About Myalgic Encephalomyelitis
Myalgic Encephalomyelitis (ME, also known as ME/CFS) is a debilitating neurological illness classified as such by the World Health Organisation under ICD-10 G93.3.
Estimated to be twice as common as MS and 3 times more prevalent than HIV/AIDS it presents clear clinical symptoms which manifest predominantly based on neurological, immunological and endocrinological dysfunction.
Most frequently follows an acute prodromal infection, varying from upper respiratory infections, bronchitis or sinusitis, or gastroenteritis, or an acute “flu-like” illness.
Before acquiring ME most patients were healthy, leading full and active lifestyles. Reaction to physical and mental activity and sensory input is unique to ME. Over-exertion can make ME worse and the effects are often delayed and may not be seen within 24 hours.
Symptoms can range from mild to very severe and can include:
- Cardiac and Cardiovascular Problems
- Cognitive Dysfunction
- Gastro-intestinal Problems
- Hormonal Imbalance
- Immunological Problems
- Muscle Weakness and Intense Pain
- Neurological Problems
- Sleep Problems
For more information visit https://www.europeanmealliance.org/MEEurope.shtml
EMEA has recently set up the first ME/CFS in Europe Roundtable meeting which brought together stakeholders and observers to discuss issues with ME/CFS and possible solutions. Working with EFNA they plan on continuing these roundtables.
EMEA recently completed a pan-European survey of people with ME to look at their experiences in order to collect data that will be used to form discussions and policies in Europe concerning ME/CFS.
EMEA is also working with the European ME Research Group (EMERG) to plan research into this disease and the European ME Clinicians Council (EMECC) to build a collaborative environment between patients, researchers and clinicians.
Raising awareness of ME
Groups in Europe use May as International ME Awareness Month with 12th May being used as specific ME Awareness Day.
The International ME Awareness Day aims to raise awareness of the devastating effects of Myalgic Encephalomyelitis (ME or ME/CFS) on patients and their families around the world. This day sees patients, carers and friends organising activities to raise awareness of this neurological disease. The theme of this awareness day can vary between organisations