Our Board of Trustees
Our Trustees ensure that the Board has all the necessary skills to govern the charity effectively. Over half the Board have direct experience of M.E., either through having the illness themselves or through a family member or close friend having M.E.
Roger Siddle, pictured above, took up the post of Chair of Trustees in March 2020, bringing with him a broad range of business and charitable experience. Currently non-executive Chairman of a number of private businesses, he also has experience advising the NSPCC on techniques for corporate fundraising, and was a member of their National Volunteer Board until 2020. Roger says: “I have been struck and frustrated by the lack of knowledge of M.E., and ways to manage the illness, by those who should – and need – to know. I believe that much more can and must be done on both research and awareness raising."
Matt Symonds was introduced to the charity when he attended the Speaker’s House reception at the end of June 2016. He was keen to get involved after he heard about the impact of M.E. and the work the charity does to tackle this. Matt stood in as Interim Chair from October 2019 to February 2020 to support Sonya and the team in the governance of the charity, and to manage a smooth succession to a full term Chair in 2020.
Philip Marsden, our Treasurer, is a chartered accountant and spent many years at Arthur Andersen & Co and the private equity group 3i. He is now a director of a corporate finance advisory company and a non-executive director of two investment trusts. Philip first became aware of M.E. in 2003 when his son was diagnosed with the illness.
Colin Batten was appointed a Trustees in 2017, following the merger of Action for M.E. with the Association of Young People with M.E, where he had been on the Board. He works with us to ensure that children’s services are an integral part of what we do.
A Chartered Accountant and retired Associate Partner of Ernst & Young LLP (EY), Shaun de Boo spent nearly 37 years with EY, advising companies on tax matters, and was also involved in managing teams and working with charities and companies in the public sector. He says: "I became aware of Action for M.E.’s activities when my son ran the 2019 London Marathon to raise money for the charity in support of his sister, who has long-term M.E."
Former solicitor at leading law firms in the UK and Australia, Alison Deeth was diagnosed with M.E. in 2006. She says "I have experience of the great harm caused by the ignorance about M.E. and the lack of support for people with the condition. My goal is to use my legal skills and experience in the charity sector to hep raise greater awareness. and to provide greater support for people with M.E. so that they can live more meaningful and fulfilled lives."
Diagnosed in 2005, Lucy Goodwill has lived with M.E./CFS for almost half of her life. She spent five years working in the youth charity sector and is now a part-time freelance consultant, working with charities on youth engagement projects whilst also managing her health. She says: "I know the devastating impact M.E./CFS can have and I am incredibly passionate about changing the landscape for future generations. I don’t want anyone else to have to go through the journey I have."
Sue Hardy has had M.E. for more than 16 years. She worked as a nurse and senior lecturer until 2013, when she suffered a relapse and took medical retirement. Sue spends some of her time talking to local groups about the work of the charity and raising funds in the process.
"The services the amazing team at Action for M.E. provide to families with individuals suffering from M.E. are incredibly important," says David Leigh, who joined us in autumn 2020. "It is also critical that more is done to understand the illness, recognise the impact it has and, ultimately, eradicate it.” David is Chief Executive at global workforce solutions firm AMS, and has Non Executive Director roles at Ambassador Theatre Group and global education company Tes.
“I do not have a direct connection with M.E., but my awareness comes from Chair Roger Siddle," says Jonathan Manuel. "I believe that I can leverage my professional, commercial and charity experience to really help continue its great work in support of those impacted by M.E.” As a Chartered Accountant, Jonathan career to date has predominantly been in senior finance and commercial roles at FTSE 100 company Diageo, both in the UK and overseas. For the last three years he has been Chief Financial Officer at Christian Aid, a £100m international aid organisation, leading all aspects of finance and playing an active role in the strategy and development of the charity.
Phil Murray was diagnosed with M.E. in 1997, since then he has worked extensively with M.E. organisations, such as Westcare UK, sat on the M.E. patient advisory group for MEGA, attended the NICE guideline scoping meeting in May and co-organised the Millions Missing protest in Bristol in 2018. He has been mainly in remission since 2007 and says that he "wants to see positive change in the lives of those affected by this devastating illness."
Jane Stacey had a career in social work and senior management within a local authority before moving to children's charity Barnardo's, where she was Deputy Chief Executive. She is particularly interested in supporting welfare rights work and the social policy issues that are linked to this.
Ed Stephens is Head of Global Brokerage and Partnerships at Angel Investment Network, one of the world’s fastest-growing start-up communities matching investors to entrepreneurs. He says: “My goal is to give back to this cause, to try and inspire those who have it, dispel doubt in those who dismiss it and be part of a charity that is really trying to improve the outcomes for people with M.E."