The ME Association (MEA) has grown significantly in recent years, delivering essential services to people with ME/CFS across the UK. This growth has been fuelled by rising demand, an increasingly visible presence, and the hard work and commitment of trustees, staff, and volunteers. With this growth, however, have come new pressures and growing pains.
In 2025, the board commissioned an independent governance review to understand what is working well, and to identify areas where improvement is needed so that the organisation could plan for the future with clarity and confidence.
The review process involved conversations with staff members, existing and past trustees, a board meeting observation and document review, and a member consultation exercise to which over 500 people responded.
Review findings
The review confirmed many of the MEA’s strengths. The charity’s information and resources are highly regarded, its commitment to people with ME is clear, and there is a strong sense of shared purpose across the organisation. The overwhelming majority of members who offered their views were supportive of the MEA and its work to meet the needs of people with ME.
At the same time, the review highlighted that some of the ways in which the organisation is operating at present can be strengthened to ensure the organisation runs smoothly and sustainably.
Areas for Development
While the organisation has achieved a great deal, the review also identified areas where governance and leadership arrangements need to evolve to support long-term sustainability. These include:
- Leadership and role clarity: At the time of the review, the organisation operated without a Chief Executive. Trustees were heavily involved in day-to-day operational matters, which blurred the lines between governance and management.
- Governance structures: The charity’s systems and processes for decision-making, performance management, risk oversight, and strategic planning require development to reflect the scale and complexity of the organisation today.
- Member engagement: While members value the organisation highly, there could be enhanced mechanisms to gather their views or involve them more systematically in shaping the MEA’s direction.
These challenges are not uncommon in charities that have grown rapidly or evolved organically over time. The recommendations offered are intended to build on the MEA’s strengths, ensuring that the organisation is well-led, inclusive and resilient for the future.
Recommendations for change
The report outlines detailed recommendations to address these challenges and support MEA’s future development. These cover areas such as leadership and staffing, board governance, communication and culture, and accountability to members. Central to these recommendations is the need to:
- To clarify leadership and strategic responsibilities.
- Develop and implement a clear strategic plan with defined objectives.
- Strengthen governance systems and policies.
- Invest in staff support, training, and performance management.
- Improve communication, transparency, and inclusion both internally and externally.
The ME Association’s trustees have welcomed the review and shown a strong commitment to learning and change. Work is already underway to consider how best to phase and implement the recommendations.
The Board of Trustees met at a workshop in early September to digest the findings, address the challenges and agree next steps. The Trustees are working together now and through the early autumn months on our plan to realise the recommendations. Once we are in a position to share that plan, we will do so transparently.
Whilst we undertake this important piece of work, we’d like to continue to share our gratitude with our Members and the community as we strive to improve the quality of life for all of those affected by ME/CFS.