Member Spotlight: Hope 4 ME & Fibro Northern Ireland
Brain Awareness Week 2024
During Brain Awareness Week 2024, we will be highlighting some of our fantastic member organisations.
Today we are highlighting Hope 4 ME & Fibro Northern Ireland
What is Myalgic Encephalomyelitis?
M.E. is a neurological disorder as classified by the World Health Organisation in 1969. It is a disabling, chronic, complex, multi-system disease, affecting 17-30 million globally and approximately 7,500 people in NI. Approx. 80% are triggered by a viral infection. There are 4 levels of severity: mild, moderate, severe, and 25% of those diagnosed with M.E. are very severe i.e. house/bed-bound. People with M.E., have a lower quality of life compared to those with: M.S., lung cancer, depression, heart disease, or advanced HIV. There are no specific tests to diagnose M.E., there are a variety of treatments that may help with some symptoms; there is NO cure.
Who are Hope 4 ME & Fibro Northern Ireland?
A registered charity run entirely by volunteer patients and their family members; campaigning for specialist ME services, dedicated to supporting ME and Fibromyalgia patients, and providing educational events for healthcare providers.
What support does Hope 4 ME & Fibro Northern Ireland offer?
Zoom Monthly Meetings with specialist speakers – Produced own self-help booklets.
Organising consultations for adults and children, with two M.E. expert Consultants who travel to NI from England.
Meetings recorded for bed/house-bound members.
Face to face social gatherings in 3 new regional hubs.
2000+ members on a ‘closed’ FaceBook (FB) page for: sourcing support services, making friends, sharing experiences and tips.
FB Announcements Page: world research, charity/other news.
M.E. and Fibro. Apps: developed by the Charity + TIYGA Health; focus on benefits of early intervention and self-management.
Weekly Zoom Craft Group, Zoom Coffee Mornings, free membership to CALM App, free membership to Listening Books.
‘Happy Hope’ surprise parcels sent to members in difficulties.
Annual Conferences/Webinars with international researchers and leading experts in ME & Fibro.
Lobbying for Specialist Biomedical Care in N. Ireland.
Fundraising to support above & towards biomedical research.
Co-production with numerous N.I. healthcare organisations.
The charity offers FREE info packs and education sessions (face-to-face/zoom) to GP Surgeries (direct request).
Other Educational Projects: e.g Discover M.E. animated, Virtual Reality, Video for healthcare professionals/students at QUB/UU.
How can people contact Hope 4 ME & Fibro Northern Ireland?
Phone: 07712 892834
Email: hope4mefibro@outlook.com
Website: http://hope4mefibro.org
Facebook Group: Hope 4 ME & Fibro Northern Ireland Announcements Page - https://www.facebook.com/Hope4MEFibro