Northern Ireland Confederation for Health and Social Care conferences

2019 — Breakthrough Leadership in Tackling Health Inequalities

Hope 4 ME & Fibro Northern Ireland was first officially invited to NICON (Northern Ireland Confederation for Health and Social Care conference) in 2019, when Joan was recognised as a “breakthrough leader” in tackling health inequalities and advancing the rights and care of people with M.E. in Northern Ireland.

The recognition reflected years of grassroots advocacy — campaigning for diagnostic pathways, specialist services, and fair access to care. The award shone a light on the deep inequality faced by people with ME: delayed diagnosis, lack of services, and inconsistent support across regions.

2022 — Bringing ‘Discover M.E.’ to the Table

Hope 4 ME & Fibro NI returned to NICON 2022 to present Discover M.E., virtual reality experience, a unique educational resource to:

Improve early recognition and shorten diagnostic delays;
Equip primary care teams with practical, evidence-informed guidance;
Promote specialist referral pathways and community-based support;
Share lived-experience insights to shape services that truly meet patients’ needs.

Why This Matters

ME remains widely misunderstood. Its hallmark, post-exertional malaise, can make standard rehabilitation harmful if applied without specialist knowledge.

Events like NICON help shift the system from neglect to understanding:

Early diagnosis can save years of suffering.
Trained clinicians prevent harm from inappropriate treatments.
Clear pathways connect patients with the right care and support.

At NICON 2022, we also worked with healthcare providers to share information on the DecodeME Study genetic study, encouraging clinicians to help raise awareness and support patient recruitment across Northern Ireland.

Looking Ahead

We remain grateful to NICON for recognising our work and providing a platform to push for change. Hope 4 ME & Fibro NI continues to turn recognition into results — better training, clear pathways, and real specialist provision for people with M.E. across Northern Ireland.

Oct 2022