About us
Forward ME is a collaborative coalition established to strengthen the national response to ME by uniting charities and campaigning bodies. Its mission is to ensure that people with ME receive the recognition, care, and support they deserve—whether through improved healthcare pathways, increased research investment, or informed and compassionate policy decisions.
Forward ME brings a collective voice to key national conversations, enabling member organisations to coordinate their expertise and resources for greater impact. The coalition advocates for evidence-based approaches, promotes awareness among policymakers and the public, and seeks meaningful improvements in the lives of people with ME across the UK.
By acting together, Forward ME ensures that people with lived experience remain at the centre of decisions, and that progress in diagnosis, care, and scientific understanding is driven by collaboration rather than isolation. Forward ME believes ‘nothing about us without us’.
How we work
Forward ME is governed through a structured framework designed to support strategic collaboration across its member organisations. The coalition is led by an elected Chair and Deputy Chair, who facilitate meetings, ensure that all voices within the coalition are heard, and represent Forward ME in external engagements.
Forward ME meets monthly to review progress, agree shared actions, and coordinate responses to emerging issues. Decisions are made collectively, with an emphasis on consensus and collaboration. Working groups report into these meetings, ensuring alignment with Forward ME’s aims and values.
Our Chairs
Simon Chandler
Chair
Carolyn Leary
Deputy Chair
Mission Statement
Forward-ME brings together national charities, support groups and campaigning organisations to improve the lives of people with myalgic encephalomyelitis (ME). We work collaboratively to influence research, clinical practice, policy, education and public understanding, ensuring that the needs—including those of the most severely affected—are heard, respected and acted upon.
Values and Principles
Forward-ME and its member organisations commit to the following shared values:
Collaboration
We work together openly and constructively, recognising that our collective impact is greater than the sum of our individual efforts.
Integrity and Transparency
We act honestly, ethically and in the best interests of people with ME, communicating clearly and maintaining transparency wherever possible. (People with ME include people living with and/or affected by Myalgic Encephalomyelitis (ME) and related or co-morbid conditions and will be referred to as ME throughout this document).
Respect and Inclusion
We value the diverse experiences and perspectives within the ME community, ensuring that all voices—including those who are severely or very severely affected and children and young people —are represented and respected.
Evidence and Excellence
We champion high-quality scientific research, evidence-based practice, and the accurate implementation of clinical guidelines.
Empowerment
We seek to empower people with ME and their families by promoting understanding, recognition and equitable treatment.
Accountability
We take responsibility for our actions and commitments, and we work to maintain trust within the ME community and beyond.
Our History
Forward ME was established by the Countess of Marr in 2008 to bring greater coordination to national ME advocacy efforts. Over time, the coalition has expanded to include a broad range of organisations, while continuing to put those with lived experience at its heart. This collaborative approach has strengthened the collective voice for change and enabled more effective, unified advocacy on the key issues facing people with ME.