Hope 4 ME & Fibro Northern Ireland hosted a World M.E. Day awareness event at Stormont this week (Tuesday 13 May) welcoming patients, carers, healthcare professionals and elected representatives for an afternoon focused on increasing understanding of the condition.
The event at Parliament Buildings was hosted by Robbie Butler MLA and attended by Health Minister Mike Nesbitt who pledged to “do what I can” to support the continued work by professionals and organisations like Hope 4 ME & Fibro to improve M.E. healthcare services in Northern Ireland.
Health Minister Mike Nesbitt said: “I welcomed the opportunity to attend the World M.E. Day awareness event and to listen to the contributions from the various speakers. My officials recently met with Hope 4 ME & Fibro and I value ongoing engagement to improve access to services for those with M.E.”
Hope 4 ME & Fibro NI was established in 2011 by Joan McParland MBE following her own experience of becoming severely ill with Myalgic Encephalomyelitis M.E. after a viral infection. At the height of her illness, she was bedbound for just under a decade and reliant on her family for care.
Speaking after the event Joan said she was delighted to see so much support for the event.
She added: “It is encouraging to see so much support from across the political spectrum in Northern Ireland.
“A recent study published by the University of Edinburgh has indicated there are estimated to be 12,500 adults and children with M.E. including post-Covid M.E in Northern Ireland.
“At our awareness event in Stormont this week we were delighted to be able to welcome contributions from Professor Tom Trinick OBE, who recently retired from the NHS, and is triple accredited in General Medicine, Endocrinology and Diabetes, and Chemical Pathology as well as Tara Anderson who presented findings from the first Northern Ireland-based academic study into the use of virtual reality as an educational tool for healthcare professionals. Published in BMC Medical Education in 2024, the study explored how immersive learning can increase knowledge and empathy in clinical settings.
“Attendees and MLAs also had the opportunity to experience the award-winning short film Discover M.E. – Hidden Lives Virtually Uncovered, a six-minute animated VR production narrated by local patients and carers that provides insight into the day-to-day reality of living with M.E.”
As part of the event, elected representatives had the opportunity to engage directly with patients, carers and families. A visual display housed in an ambulance at the front of Stormont focused on severe M.E. and offered a clear and accessible view of the devastating impact the condition can have on all aspects of life.
Robbie Butler MLA who hosted the invitation only event at Stormont also showed his support to the charity by raising awareness of the condition during World M.E. Day on Monday in the Chamber.
He said: “I want to talk about the ongoing, often physical, suffering of those living with Myalgic Encephalomyelitis (M.E.), this complex and debilitating neurological condition affects thousands of people across Northern Ireland.
“M.E. can leave individuals house bound or bedroom bound for years, it causes profound pain, cognitive dysfunction and hypersensitivity to light and sound.
“For over 14 years, Hope 4 M.E. & Fibro Northern Ireland has worked to fill this gap through their advocacy, education and efforts, they have kept M.E. on the public health agenda.
“I have been proud to support and work alongside the group over the years, recognising the essential advocacy they provide for a community too often overlooked.”
The event also marked the 25th anniversary of ME Research UK, a charity funding biomedical research into M.E. since 2000. Their participation underscored the importance of scientific evidence in shifting perceptions of the condition and informing future service development.
Also in attendance at the Stormont information event were MLAs Alan Chambers, Danny Donnelly, Peter McReyolds, Liz Kimmins, Jonathan Buckley, Paula Bradshaw, Peter Martin and Joanne Bunting.
Entirely volunteer-led, Hope 4 ME & Fibro has organised 17 medical conferences since their inception in 2011, bringing international researchers and clinicians to Northern Ireland to speak directly to local audiences. It also provides regular educational webinars for health professionals and students and continues to push for greater clinical recognition of both conditions.
The organisation has also contributed to research, supported awareness initiatives such as Light Up The Night and World M.E. Day campaigns, and offers ongoing peer support to a community often marginalised by mainstream services.
To learn more about the work of Hope 4 ME & Fibro Northern Ireland, go to hope4mefibro.org
