In 2025, the Board commissioned an independent governance review to assess how effectively the charity’s structures, leadership arrangements, and working practices support its mission—and to identify changes required to ensure sustainability, accountability, and organisational clarity.
The review process included discussions with staff, current and former trustees, observation of a Board meeting, examination of key documents, and a member consultation exercise with over 500 responses.
In autumn, the Trustees issued internal and external statements outlining the key findings. Since then, the Board has been working through all 49 recommendations made in the report.
The recommendations were grouped into short-term (3–6 months), medium-term (6–12 months), and long-term (12–18 months) priorities. A number of recommendations—particularly those concerning strategy, Board recruitment, leadership structure (including introducing a CEO/Director role), the removal of executive functions from Trustees, development of an annual business/operational plan, and the creation of a reserve’s policy—are strategic in nature and fall into the medium- or long-term categories.
Rather than taking a linear approach that could take up to 18 months, our intention is to implement the majority of recommendations, including those informed by staff and member consultations, more quickly and effectively where finances allow.
Our proposal therefore is to:
- Clarify leadership and strategic responsibilities.
- Develop and implement a clear strategic plan with defined organisational objectives.
This approach will also enable progress on several key recommendations, including:
- Strengthening governance systems and policies.
- Investing in staff support, training, and performance management.
Proposed Divisional Structure
The Trustees of the MEA are proposing a new corporate structure organised into strategic Divisions. These Divisions align directly with the charity’s core strategic functions:
- Support
- Educate & Influence
- Research
- Finance & Operations
- Income
Each Division will be overseen by a designated Champion/Lead.
The purpose of this structure is to:
- Accelerate implementation of the 2025 Governance Review recommendations, including:
a. Providing immediate executive leadership until such time as a formal review of the structure (including roles such as CEO or COO) becomes financially and strategically viable.
b. Enabling the Divisional team to work collectively to deliver the charity’s strategic objectives through a single organisational strategic plan.
c. Managing the development of Divisional, strategically aligned KPIs, supported by clear, costed delivery plans.
d. Ensuring that Divisional plans and KPIs are routinely reviewed and reported.
e. Making collective decisions as a Divisional team—based on mutual understanding of all strategic areas—and, where appropriate, submitting recommendations to the Board of Trustees.
f. Providing support to colleagues as required.
g. Fostering a collaborative working environment founded on trust, respect, and integrity. - Embed income generation within every workstream, ensuring fundraising is integrated across organisational activity to reduce the deficit and reliance on reserves.
- Collaborate with the Campaigns Director to support the development of a strategically led annual programme of campaigning activities.
As we undertake this important work, we extend our sincere thanks to all staff, volunteers, members, and supporters as we continue striving to improve the lives of everyone affected by ME/CFS.
Questions and Answers
More Information:
- The ME Association – Governance Review: Stage 1 Announcement Autumn 2025 | October 6, 2025
- MEMBERS ONLY – Notice of Annual General Meeting of The ME Association | November 27, 2025