Stormont - World M.E. Day 2025 - Awareness & MLA Engagement

Stormont World M.E.Day 2025 - Information Session & MLA/Patient Engagement

 

Hosted by Robbie Butler MLA - Opening Address by Minister of Health for Northern Ireland Mike Nesbitt 

 

Join us at Parliament Buildings on Tue May 13, from 2.00pm - 3.00pm for our World M.E. Day Awareness and Information event happening in Room 115!

 

Hear from our eminent, Northern Ireland based, Medical Advisor on the urgency to Recognise - Diagnose - Support ME

 

Connect with ME Research UK charity, coming to Stormont to mark their 25th anniversary of funding biomedical research, globally!

 

Learn about the first ever Northern Ireland-based research study on M.E., with results published in BMC Medical Education.

 

Unique opportunity to immerse in our virtual reality M.E. education tool to learn of the real-lived experience of N.I. patients, in just 6.40 minutes.

Additionally, from 3.00pm we will have an MLA/Patient Engagement session and severe M.E. visual display in the Apron Area.
Don't miss this unique opportunity to be part of the change for adaquate and reformed patient.

 

Robbie Butler MLA has been a consistent supporter of Hope 4 ME & Fibro NI, actively participating in meetings with health commissioners, awareness events and advocating for individuals affected by Myalgic Encephalomyelitis (M.E.) and Fibromyalgia.​ Robbie’s role in hosting his third event in Stormont and other events in his constituency area, underscores his commitment to facilitating dialogue between stakeholders, and advocating for systemic improvements in healthcare services.​

 

‘Lighting the Way for M.E.: A Vision of Hope and Change in 2025’. 

Joan McParland MBE
In 1999, Joan's life took a dramatic turn when a sudden viral infection left her severely incapacitated with M.E., rendering her bed-bound and totally reliant on her family for nearly a decade. This personal battle with a misunderstood and often stigmatised illness inspired her to take action.​ In 2011, she founded Hope 4 ME & Fibromyalgia NI, an all-volunteer, patient-led charity officially registered in 2014. The organisation offers vital support through monthly Zoom meetings, annual conferences featuring international experts, and advocacy efforts aimed at improving healthcare services for patients across Northern Ireland. Under her leadership, the charity was granted the Queen’s Award for Voluntary Services, the highest accolade for volunteer groups in the UK. ​

 

14:15 - 14:25

Virtual Reality Education on M.E. for Medical Students/Health Professionals

Tara Anderson introduces the *first ever Northern Ireland research on M.E. “Virtual reality education on myalgic encephalomyelitis for medical students and healthcare professionals: a pilot study.” Published in BMC Medical Education in September 2024. Learn how immersive virtual reality (VR) educational experiences within healthcare education can increase knowledge and empathy of M.E.

 

14:25 - 14:45

Fatigue, Long Covid and Myalgic Encephalomyelitis (M.E.)

Professor Tom Trinick will present on the urgency to recognise, diagnose and support M.E! Recently retired from the NHS, Professor Trinick is triple accredited in General Medicine, Endocrinology and Diabetes, and Chemical Pathology. Clinical Director for Laboratory Medicine, on the Consultant on-call rota for over 30 years, and running clinics in General Medicine, Lipid Management and Testosterone Deficiency, Prof. Trinick has also sat on many Department of Health and Area Board Committees.

 

 

14:45 - 15:45

An Opportunity to Experience Virtual Reality, DISCOVER M.E. (6-minutes)

Attendees will have an opportunity to immerse in the virtual reality ‘Discover M.E. - Hidden Lives Virtually Uncovered.’ An award winning, animated short film, narrated by six Northern Ireland patients and carers on the real- lived experience with Myalgic Encephomyelitis.

 

14:45 - 17:00

Drop in - MLA/Patient Engagement

The Apron Area is the space at the bottom of the steps of the front of Stormont Building, home of the Northern Ireland Legislative Assembly. All 90 of our elected representatives will receive an official invitation to view our severe M.E. visual display and meet with patients, carers and family members. Don’t miss this opportunity to engage directly with MLAs on the need for specialist M.E. services in Northern Ireland