Northern Ireland Representation at M.E. All Party Parliamentary Group

While health is a devolved matter in Northern Ireland, Westminster leadership matters — setting political direction, applying pressure, and strengthening the case for action. This is critical for the estimated 12,500 people living with M.E. in NI, who remain without specialist services, despite our relentless campaign since 2011.

Westminster leadership strengthens the case — but responsibility now sits squarely with the NI Executive and Department of Health. The evidence exists. The need is clear.

The APPG held its AGM at Westminster this week, with Tessa Munt MP taking over as Chair from Jo Platt MP. The group continues to be supported by the ME Association (MEA) and Action for ME (AfME), who jointly provide the Secretariat and funding.

We are grateful to Carla Lockhart MP and the All-Party Parliamentary Group (APPG) on M.E. for ensuring people in Northern Ireland are represented at Westminster.

This representation reinforces our call for the NI Executive and Department of Health to act. People with M.E. cannot wait any longer.
Read more about the M.E. APPG Here

Accountability matters. A very brief account of the reality for people with ME in Northern Ireland.

2011

After 9 years of sustained campaigning and repeated meetings with senior N.I. health officials — supported by bringing world-leading clinicians and researchers to brief politicians and decision-makers — progress appeared possible.

2013

The charity enlisted support from the Patient & Client Council N.I. and two seperate Focus Groups were formed, an M.E. Focus Group and a Fibromyalgia Focus Group. The need for two groups was to distinguish between these two illnesses which share some overlapping symptoms but require very different management approaches - and due to patient safety issues from high rates of misdiagnosis. Misdiagnoses on A Grand Scale

2018

A dedicated ME Clinical Lead post was finally advertised and interviews took place. A successful candidate was recruited.

2019

The appointed Clinical Lead stepped down without ever seeing a patient, due to unresolved disputes around status, salary, premises and — critically — the failure to commission specialist ME services.

A second round of interviews was arranged, then cancelled at the last minute, later to be rescheduled and ultimately abandoned.

Subsequent engagement was dropped entirely following the disbandment of the Health and Social Care Board (HSCB), with responsibility later transferred to the HSC Strategic Planning and Performance Group (SPPG).

2023

As the situation surrounding the Covid pandemic settled, our charity re-engaged with SPPG, and negotiations continue....

2025

On 3rd December 2025, our trustees and Medical Advisor, Professor Tom Trinick met with N.I. Health Minister Mike Nesbitt and SPPG officials and await a responce to new proposals to support healthcare provider M.E. education.

21/01/2026