Hope 4 ME & Fibro N.I., is a Northern Ireland based charity, providing support and education for patients suffering from M.E., CFS and Fibromyalgia. We host an annual educational conference for healthcare providers, medical students and service users, and bring world leading experts to Northern Ireland.
The work involved in running the charity is performed entirely by patient volunteers, five M.E. and/or fibromyalgia patients and, one parent of a child with M.E. We do not receive any core funding and rely on the generosity of our members and supporters and small outside funding opportunities, when available.
The aim of the charity is to raise awareness of M.E. and Fibromyalgia and to provide information and education to patients and to their healthcare providers.
M.E. is not included in the medical curriculum, therefore we focus heavily on medical student education, by providing a free screening of the educational documentary UNREST and providing extensive information packs to all student attendees. This project has been running for two years from 2018 in collaboration with Queen’s University Belfast and we have been invited back to deliver this learning opportunity for medical students again in 2020.
We also fundraise for bio-medical research which will eventually bring effective treatment and someday a cure for these debilitating conditions.
Since our campaign began in 2011, we have undertaken persistent lobbying of MLAs and MPs in the Northern Ireland Legislative Assembly and we continue to work closely with the Patient and Client Council, Health and Social Care Board and Public Health Agency.
We were instrumental in setting up the first ME and fibromyalgia Focus Groups in Newry in 2013 in collaboration with P&CC and as a direct result, a new care NHS pathway for fibromyalgia is under development and a new Clinical Lead for ME has been appointed and will soon be accepting referrals. (To be updated when these new NHS specialist services are fully operational)
We provide 10 monthly meetings, with specialist speakers, held in
The Mourne Country Hotel, Newry on the 1st Tuesday of the month.
We livestream speakers at monthly meeting out to a closed ‘Members Only’ secret FaceBook Page, to enable our bed/house bound patients to view from the comfort of their homes. These recordings remain on the Member’s FB Page and cover a wide range of topics relevant to living with chronic illness.
The charity provides four FaceBook Pages, (Volunteer admins cover 24/7)
: Hope 4 ME & Fibro Northern Ireland- Announcements Page
: Hope 4 ME & Fibro Northern Ireland (Closed FB Page for all patients/carers)
: Hope 4 ME & Fibro Northern Ireland ‘Member’s Only’ (Livestream Events)
: Hope 4 ME & Fibro Northern Ireland-Parent’s Page
(NB. No meetings will take place in August and September 2019 to enable the charity volunteers to prepare for this year’s international conference, being held in Riddle Hall, Belfast, at 5pm on Wednesday 4th September)
Charity No: NIC100184
Holders of the Patricia Graham Award for Voluntary Services to the Community (2014)
Members of the European ME Alliance (EMEA)
Members of NICVA
Recognised and nominated as ‘Patient Leader’ at NICON 2019
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