Listening to the Myalgic Encephalomyelitis (ME) patients’ voice.
An informative session for Patients, Carers, Families, Friends and Health Professionals
When: Saturday, June 29th, 2019 from 11.30 am – 1 pm.
Where: Arena Thon Hotel, room Romerike – Nesgata 1, 2004 Lillestrøm, Norway
To support this year’s Awareness Campaign for brain disorders ‘#BrainLifeGoals’, the European Federation of Neurological Associations (EFNA) will organise a Public Awareness Day on Myalgic Encephalomyelitis in cooperation with the European Academy of Neurology (EAN) and the Norwegian ME Association.
This event, which coincides with the European Academy of Neurology Annual Congress in Oslo, is open to people living with ME, their family and friends, carers, health professionals or anyone interested in learning more about this debilitating disease.
Attending the event is free of charge, and registration will start at 11 am at the Arena Thon Hotel. All presentations will be in Norwegian/Swedish.
- Professor Kristian Sommerfelt
- Professor Lauri Soini
- Helena Huhmar
- Trude Schei and professor Arild Angelsen (The Norwegian ME Association)
- THE LATEST RESEARCH IN ME: (25 min.)
To be presented by a European ME researcher from the pool of researchers whom the European ME Alliance (EMEA) are working with to develop The European ME Research Group (EMERG), a collaborative working group that increases biomedical research into Myalgic Encephalomyelitis (ME) in order to find cause(s), treatment(s) and understanding about the disease. EMERG is a concept formed by EMEA to provide a powerful combination of campaigning, raising of awareness, building new research and accumulation of data based on collaboration and sharing of experiences and knowledge, which allows rapid progress in the building up a strategy of high-quality research into ME.
- THE RESULTS OF THE SURVEY OF THE SECLUDED PATIENTS: (20 min)
Reports about the (very) severely affected ME-patients in Norway will be presented by the Norwegian ME Association, an organisation with around 5000 personal members with headquarters in Oslo and sub-associations in all Norwegian regions. They are a member of the European ME Alliance (EMEA), a grouping of European national organisations who are involved in supporting patients suffering from ME/CFS). A debilitating neurological illness classified by the WHO under Diseases of the nervous system.
- LISTENING TO THE PATIENTS’ VOICE: (25 min)
The European ME Clinicians Council, is a newly formed network of clinicians in Europe who can support each other and work together, aggregating the knowledge of experienced clinicians on clinical sub topics related to ME. They will share this knowledge about their experience in treating ME patients and how their work could lead to possible guidelines and providing patients, caregivers, advocates, clinicians and researchers the most up to date information is a critical outcome.
- PANEL DISCUSSION (20 min)
After the presentations there will be time to ask questions to the speakers.
If you are interested in attending this event, send an email to Ellen V. Piro, – firstname.lastname@example.org – with your NAME, PHONE NUMBER and EMAIL ADDRESS.
Places are limited so please register before June 13th, 2019.