2024/25 Charity Commission for N.I.- Annual Report

2024 - 2025 Hope 4 ME & Fibro Northern Ireland’s submission to The Charity Commission for Northern Ireland is available on their website from today. The following is a summary of our Trustee Annual Report with link below to the full document. Thank you to all who take part and support our endeavours.

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Advocacy, Strategic Engagement, Education & Patient Support 2024/25

Hope 4 ME & Fibro Northern Ireland continues to build vital bridges between the patient community, healthcare professionals, educators, and policymakers. Our consistent advocacy led to significant progress at multiple levels, reflecting our commitment to improving recognition, diagnosis, and support for people living with Myalgic Encephalomyelitis (M.E.) Fibromyalgia and post-Covid M.E.

In March 2024 and 2025, we met directly with the Department of Health’s Strategic Planning and Performance Group (SPPG) and the Public Health Agency (PHA) to highlight the urgent need for specialist M.E. services in Northern Ireland. in accordance with the NICE guideline on ME/CFS 2021, NG206 – already endorsed as applicable to Northern Ireland by the DoH N.I. These high-level meetings helped strengthen understanding of the patient experience and the gaps in current provision.

As a direct result of our advocacy, the Health Minister Robin Swann publicly endorsed our cause, lending his voice in a video message in support of our work—a significant milestone in gaining political and institutional recognition.

Further positive outcomes were secured, including the Public Health Agency N.I. sharing our series of 5 webinars (co-produced with the HSC Clinical Education Centre and a pledge to update NI DIRECT ‘A-Z Symptom Sorter’ content on M.E.

6th March 2025 we Co-produced a General Practice NI (GPNI) ME/CFS Clinical Update Webinar session, held for ALL GP Practices and staff across NI – accessible on an ongoing basis.

This year also saw the development of a comprehensive three-year strategy for our charity, setting out clear objectives to enhance awareness, influence policy, support biomedical research, and strengthen professional education. This strategic document is guiding our future actions and providing a strong foundation for partnerships and accountability.

In the field of professional education, we made meaningful progress by meeting with the Queen’s University Belfast (QUB) School of Nursing and Midwifery, paving the way for increased educational opportunities on M.E. for student nurses.

We also continued our longstanding collaboration with QUB’s School of Medicine, ensuring ongoing delivery of M.E. education to medical students—helping to address thecritical gaps in clinical understanding and awareness that have historically left patients underserved.

Alongside these advocacy and educational efforts, supporting patients remained at the heart of everything we do. We continued to provide connection, information, and emotional support through multiple Facebook groups tailored to different patient needs, as well as monthly online and face-to-face meetings, online Craft Group meetings and telephone information line.

These services are lifelines for many, offering understanding and community in the face of isolation and uncertainty. Together, these achievements reflect a year of purposeful action, strategic growth, and compassionate care.

Financial Statement 1/04/24 to 31/03/2025 Here

The full Charity Commission submission can be viewed HERE