Our trustees
MEAction UK is governed by a dedicated board of trustees who bring diverse expertise in ME advocacy, healthcare, research, policy, and charity governance. Our trustees are committed to ensuring MEAction UK operates with integrity, transparency, and effectiveness in pursuit of our mission.
We are thrilled to welcome the following trustees to our board.
Aideen Beirne
Aideen's personal involvement with ME started 14 years ago when she began living with the condition herself. This lived experience gave her a firsthand understanding of the isolation, systemic neglect, and deep resilience that define the community's daily reality.
Professionally, she brings a background in NHS human resources and administration to the board, alongside valuable experience managing fundraising campaigns for other charities. In October, she will commence her university studies in law, focusing on a strong interest in disability discrimination and employment rights.
This combined legal, administrative, and lived experience fuels her deep passion for ensuring the collective voice of the ME community is forcefully acted upon. Driven by a desire to bring the community out of the shadows, she is dedicated to helping those whose voices need to be heard most. She looks forward to working alongside her fellow trustees and all MEActions team members to ensure that people with ME are fully understood and supported in every aspect of life—from medical environments to social spheres—while fiercely advocating for vital treatments, rigorous research, and institutional validation.
Michelle Sweeney
Appointed as a trustee in June 2026, Michelle first learnt of the devastating impact of ME on those it affects 10 years ago via a friend whose son has very severe ME. Recently time has allowed her to offer more active support, a timely coincidence as MEAction UK were recruiting for trustees.
A self described ‘Jack of all trades’, who thrives on change, she has a broad experience of working across the Private, Public and Third Sectors along with significant Board level experience of good governance.
For the past 30 years she has worked at a strategic level across the fields of Education, Marketing and the Arts & Culture, all with the connecting thread of challenging the pace of public systems and giving a meaningful voice to the communities they represent - ‘Nothing about us, without us!’
Most recently she served as Director of Creative Development at Fife Cultural Trust, with responsibility for Marketing and Communications as well as Creative Development across Fife’s Theatre’s, Museums, Galleries, Archives and Libraries.
As a new trustee Michelle looks forward to contributing to the development of our strategic direction and to strengthening and developing our communication scope and style so that our reach is broadened to those within the wider public who have little understanding of the shocking lack of medical understanding or resources available to support those with ME.
Jemma Sharples
Appointed as a Trustee in June 2026 Jemma brings a powerful blend of lived experience, clinical training, safeguarding expertise, strategic leadership, and policy insight to her role as a trustee of ME Action UK. Diagnosed with ME at the age of fourteen, she carries a deep personal understanding of the condition and a long‑standing commitment to improving recognition, care, and outcomes for the ME community.
Trained as a Learning Disability Nurse, Jemma has built a diverse career across community services, mental health, and acute hospital settings. She has held senior management and strategic leadership roles within the NHS, where she has shaped services, led multidisciplinary teams, and driven improvements in person‑centred, equitable care.
Jemma has contributed to policy development within the NHS, translating frontline realities into strategic decisions that influence service design, workforce practice, and patient experience. Her policy work reflects her commitment to systemic improvement and her determination to ensure that patient voices are represented at every level of decision‑making.
Jemma’s decision to join ME Action UK is rooted in years of following and supporting the organisation’s work. The film Unrest was a pivotal moment for her, bringing global visibility to the lived reality of ME and deepening her resolve to contribute to meaningful change. ME Action UK’s commitment to community empowerment aligns closely with her values and her personal journey.
As a trustee, Jemma is dedicated to strengthening ME Action UK’s influence, amplifying patient voices, and supporting the organisation’s mission to secure recognition, research, and equitable care for everyone affected by ME.
Our new trustees join our existing board which consists of:
Denise Spreag - Chair
Denise has been a trustee of MEAction UK since October 2022 and became Chair of Trustees in March 2023.
Denise became involved with #MEAction UK in 2017 when she saw Unrest and which inspired her to volunteer at film screenings. She then organised the 2018 London #MillionsMissing protest. She has since organised several online and in-person events, including one outside Parliament. She worked on the campaign to persuade NICE to review the 2007 ME guideline, lobbied Parliament, is in charge of social media, writes documents and media responses, interviews and edits and has been involved, as a volunteer, in every aspect of the work that MEAction UK undertakes. She has been heavily involved in setting up MEAction UK as a charity and is excited to see how MEAction UK develops, grows and builds on the tireless work and amazing achievements of its small band of dedicated volunteers.
Denise has worked in marketing and for the charity and education sectors. She is the author of a young adult dystopian fiction trilogy. Her personal involvement with ME started when her young son became bed-bound with ME and she found it difficult to access treatment or support.
Janet Sylvester - Trustee
Janet was appointed as a trustee of MEAction UK in October 2022.
Janet’s involvement with #MEAction started when she supported her daughter, Emma, in organising Scotland’s first Millions Missing in 2017. She and Emma then organised a showing of Unrest at the Scottish Parliament before setting up #MEAction Scotland in March 2018 as an affiliate of #MEAction UK. #MEAction Scotland was set up with the specific aim of campaigning for support for people with ME in Scotland, specifically in the development of specialist services, the promotion of healthcare education and commitment to research funding. Following the establishment of #MEAction Scotland Janet and Emma presented a petition with over 7,000 signatures to the Scottish Government, highlighting the desperate need for support. Since then, Janet has worked across #MEAction UK and #MEAction Scotland. Her activities in #MEAction UK include campaigning for the NICE guideline; sitting on one of the working groups of the UK Government’s Delivery Plan for ME/CFS; and organising information stalls at two Royal College of Medicine conferences. Her work for #MEAction Scotland has involved organising Millions Missing in Edinburgh and Glasgow; campaigning for healthcare education; liaising with civil servants and Ministers in the Scottish Government; building awareness and support amongst Members of the Scottish Parliament; and contact with local Health Boards.
Prior to setting up #MEAction Scotland, Janet was Managing Director of a Scottish research company, working primarily with charities and the public sector. She hopes that her research and project management skills will help the development of MEAction UK.
Our thanks go to our outgoing trustee Malcolm Bailey.
Malcolm was appointed as a trustee of MEAction UK in October 2022 and became involved with #MEAction UK in 2016 at the first #MillionsMissing as a show of support for his partner who had lived with ME for over 20 years.
Since that first induction to the world of ME advocacy, Malcolm has helped with running all aspects of MEAction UK in some capacity, whether managing stewards at events, tracking changes between drafts of NICE guidelines or troubleshooting MEAction websites and social media.
As he steps down from the charity, Malcolm is excited to see the board grow and a strong team develop that can continue the work that has already been achieved with limited resources and grow the impact on behalf of all those with ME.