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Our Board of Trustees

Our Board of Trustees

We are an organisation for people with M.E. led by people with M.E. Over half of our Board of Trustees have direct experience of M.E. (either through having the illness themselves or through a family member or close friend having M.E.), as do many of our staff and volunteer colleagues. 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.

We regularly review the skills and backgrounds of our Board members and are looking for people who bring:

  • Scientific and/or research expertise
  • Policy experience at local or national level
  • Local government experience
  • Communications expertise

Visit our ‘Work or Volunteer With Us’ page to find out about current Trustee roles.

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."

“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. Jonathan is our Treasurer.

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.

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."

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.

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.

Julianne Devine is Global Antitrust Counsel at Diageo PLC and leads the team in advising the business on all aspects of competition law and merger control laws. Julianne previously was a Supervising Associate at Simmons & Simmons LLP in the Competition and Antitrust team in London. She studied law at the University of Bristol before going to BPP Law School in London. Julianne’s brother has had M.E. for the last 15 years and she has seen first-hand how difficult the disease is to manage, both in terms of accessing effective care and support, as well as socialising and integrating into society. Julianne is delighted to join the board at Action for M.E. and is passionate about making a difference to the health and social care that is available to people living with M.E.

Rollo Hope is a civil servant in the Department for International Trade leading a team to drive UK technology exports and also works with international tech companies looking to set up here. Prior to the civil service, Rollo was Chief of Staff to a senior MP for five years. Rollo chairs Action for M.E.’s Healthcare Services Board and was previously chairman of the ME Trust which merged with Action for M.E. to provide healthcare support to people living with M.E. Having had M.E. from aged 15 to 25, Rollo is delighted to be able to continue to support this crucial work of providing care and support to people struggling with this devastating illness.

Philip Courtney is Head Tax EMEA & APAC for Cantor Fitzgerald. Philip trained as a Chartered Accountant at Arthur Young McClelland Moores & Co and qualified in May 1998. He has specialised in international tax working in the profession with Arthur Young and Touche Ross, and then in industry with the Fiat Group and Clifford Chance, one of the world’s pre-eminent law firms. He has experienced at close hand some of the challenges faced, especially for children, when doctors and other professionals run out of surgical solutions. Philip employed an amazing and inspirational woman who suffered with M.E. to help run a two-year project and one of Philip's best friends at university has suffered with M.E., and approached Philip to help her start and build The ME Trust, which merged with Action for M.E. in February 2022.

Dr Nirmala Santiapillai has more than 30 years of global commercial experience in the Life Sciences and MedTech sectors. She is currently Vice President, Global Services at Oxford Nanopre Technology (ONT), a UK Life Sciences company whose mission is to democratise DNA sequencing such that all human disease can be understood to enable the vision of personalised medicine. Prior to joining ONT she spent 16 years in GE Healthcare where she built her knowledge of global healthcare systems. Nirmala has a PhD in Neurochemistry from University of Cambridge and a BSc in Biochemistry from Imperial College London.

Nirmala says: “Whilst I have not been personally touched by M.E. I was struck by the fact that there is so little understanding of the underlying genetic drivers for M.E. which in turn is impacting the development of diagnostic and treatment options. I believe that patients with any clinical condition should have the benefit of the best tools at hand to research the condition, making personalised medicine a reality for all.

“Being a cancer survivor I know the critical importance of fundamental disease research and the important role patient advocate groups play. I hope to meet you all and be able to meaningfully contribute to your journey to transform the lives of patients living with M.E.”

Jeff Banks has worked for over 30 years, leading voluntary and community sector organisations and multi-agency partnerships, working across health, education and social care. Most recently, Jeff served as Director of Strategic Partnerships at a large NHS Integrated Care System, where he led the establishment of large and complex Integrated Care Partnership and the system-wide Integrated Care Strategy.

Jeff's work has always focused on equality and human rights, and he has led a number of disabled-led organisations.

Jeff has lived with M.E. since 2002.

“I am honoured to have been appointed a Trustee of Action for M.E. and to have the opportunity of supporting this wonderful charity.

Having lived with M.E. myself since 2002, I am acutely aware of the importance of ensuring individuals with M.E. and their families get the information, advice and support they need, and that health and care professionals, employers and the wider community understand the impact of M.E."