I rise to mark the beginning of ME Awareness Week and highlight the ongoing, often invisible, suffering of those living with myalgic encephalomyelitis. That complex and debilitating neurological condition affects thousands across Northern Ireland but remains chronically under-recognised and, in some cases, underserved in our health system. ME can leave individuals housebound or bedroom-bound for years. It causes profound fatigue, pain, cognitive dysfunction and hypersensitivity to light and sound. Sadly, many patients still face disbelief, stigma and a lack of appropriate care. Despite its severity, there are no specialist services for ME patients in Northern Ireland.
There will be an event tomorrow in room 115 that Members are more than welcome to drop into. For over 14 years, Hope 4 ME & Fibro NI has worked to fill the gap. Through its advocacy, education and efforts, it has kept ME on the public health agenda. I have been proud to support and work alongside the group over the years, recognising the essential advocacy that it provides for a community that is too often overlooked.
So spoke Robbie Butler MLA (deputy leader of the Ulster Unionist Party) to the Northern Ireland Assembly to mark International ME Awareness Day on 12th May 2025. The next day he opened a highly successful meeting at the Parliament Buildings organised by Hope4ME & Fibromyalgia NI – a charity run by patients and family volunteers for people with ME, Fibromyalgia, and Covid-induced ME. The meeting was attended by MLAs, political representatives, healthcare workers, academics, & educators and the audience heard the Minister of Health Mike Nisbett MLA pledge his determination to help those affected by M.E. Northern Ireland presently having no specialist services for ME/CFS and the degree of implementation of the Delivery Plan for ME/CFS is still unclear.
Hope4ME & Fibro NI’s Founder Joan McParland MBE set the tone of the meeting with her speach ‘Recognise, Diagnose and Support M.E.‘ and on the Northern Ireland ME situation and the urgent need for action.
Hope 4 ME & Fibro NI’s Medical Advisor, Prof. Tom Trinick OBE, who recently retired from the NHS, and is triple accredited in General Medicine, Endocrinology and Diabetes, and Chemical Pathology, thereafter provided details of the most common symptoms of ME/CFS concentrationg on fatigue and post-exertional malaise before a short Q&A session.
The audience then learned about research by Dr Tara Anderson of Queen’s University Belfast who presented findings from the first Northern Ireland-based academic study – into the use of virtual reality as an educational tool for healthcare professionals. The paper, published in 2024 being entitled, “Virtual reality education on myalgic encephalomyelitis for medical students and healthcare professionals: a pilot study” and was the perfect way to introduce and explain the VR headsets available at the close of the meeting.
The event also recognised the need for research into the disease and marked 25 years since the foundation of ME Research UK. The charity was represented by its Operations Director who presented a short closing speech after which attendees were invited to descent to Stormont’s apron to view a (not on active service) ambulance whose interior had been adorned with information on the disease, its effects, and the need for specialist care and recognition in Northern Ireland. On view was ‘Simon’ a mannequin on a gurney annotated to highlight the physical symptoms of the biological disease which is M.E.
There was also the opportunity, taken by many including MLA’s Alan Chambers (Member of the Northern Ireland Health committee and Health Spokesperson for Ulster Unionist Party) and Danny Donnelly (Alliance Party and Deputy Chairperson of the Northern Ireland Health Committee), to don a VR headset and enter a virtual reality experience which introduces M.E. and addressed the stigma and misinformation surrounding the disease honed from personal experiences. The headsets are used to increased awareness and education of M.E. which then becomes a learning and discussion point to share with others and is an extension of the Discover M.E. film initiative.
ME Research UK thanks Hope 4 ME & Fibro NI for teh opportunity to participate and congratulates the group on an excellent meeting.
