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The ME Association – Post AGM Statement - The ME Association

Stage 3 Announcement Winter 2025 Following the December 2024 AGM, […]
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The ME Association – Post AGM Statement​

January 12, 2026

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Stage 3 Announcement Winter 2025​

Following the December 2024 AGM, the Board commissioned an independent governance review to assess how effectively the charity’s structure, leadership arrangements, and working practices support its mission. The review also sought to identify changes required to ensure long-term sustainability, accountability, and organisational clarity.

In autumn 2025, the Trustees issued internal and external Stage 1 statements outlining the key findings of the review. A number of recommendations, particularly those relating to strategy, Board recruitment, leadership structure (including the introduction of a CEO/Director role), the removal of executive functions from Trustees, and the development of an annual business/operational plan, were strategic in nature.

As a result, in December 2025 the Trustees issued Stage 2 internal and external statements setting out a proposed new corporate structure. This structure is organised into strategic Divisions designed to respond to the review’s recommendations and align directly with the charity’s core strategic functions:

  • Support
  • Educate & Influence
  • Research
  • Finance & Operations
  • Income
The charity is currently in a consultation period, which runs until 16 January 2026.

The governance review produced 49 recommendations. To date:

  • 14 recommendations have been completed
  • 22 recommendations are in progress and linked to the proposed Divisional structure
The remaining recommendations relate to medium- to long-term actions, including:

  • Reserves
  • Trustee recruitment, tenure, and review processes
  • Associate trusteeship
Since the December 2024 AGM, the ME Association has committed to funding just over £2 million in research projects. This level of investment will significantly reduce reserves over the next two years. A large proportion of this committed spend will be met from general funds, built from legacies.

The charity’s conservative reserves policy over the past 20 years has enabled it to fund major initiatives, including:

Without building and maintaining adequate reserves, the charity would not be able to fund significant and meaningful research, support, and educational projects.

Trustee payments were also considered as part of the governance review and are managed in accordance with the charity’s Articles of Association, the Trustee Act 2000, and Charity Commission guidance.

The review highlighted a number of trustee-related issues that are currently being addressed and was complimentary of the associate trustee system. It recommended consideration of trustee tenure lengths and the recruitment of new trustees. This charity is currently considering four potential new trustees and will undertake a wider recruitment campaign if required. A formal trustee review and tenure regime, exceeding the recommendations of the Charity Governance Code (CGC) will be implemented.

Both Trustee tenure arrangements and Associate Trusteeship will be introduced through amendments to the charity’s Articles of Association.

We continue to be committed to working together with MEA members and the ME/CFS community, and remain focused on improving the quality of life for those affected by ME/CFS. We will do this by providing support and information; funding research to find biomedical markers and treatments and educating, influencing, and informing a broad eco-system that includes media, politicians, educators, health and social care providers and the commercial sector. This has always been and continues to be our focus, and we are grateful for the support we receive in realising these goals.
 
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