Current Trustees
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 volunteered at 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. Malcolm Bailey - Trustee Malcolm was appointed as a trustee of MEAction UK in October 2022. Malcolm 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 he's almost certainly been involved. As a trustee, Malcolm is excited for the opportunity to help grow a strong team that can continue the impact that has already been achieved, with such limited resources. Malcolm works as a software developer, primarily in the marketing world, where for over 25 years he's leading projects for a number of high profile clients. 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.