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Our Board of Trustees

Our trustees guide Action for ME’s work and ensure the charity is governed effectively. They bring experience in healthcare, research, finance, law, policy, communications and the charity sector.

We are an organisation for people with ME, led by people with ME. Over half of our Board of Trustees have experience of ME through living with the illness themselves, or through a family member or close friend.

Meet our trustees

Select a name below to read about each trustee’s experience and connection to our work.

Roger Siddle 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 ME, 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 ME, 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 ME.” As a Chartered Accountant, Jonathan’s 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.

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 ME'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 ME".

"The services the amazing team at Action for ME provide to families with individuals suffering from ME 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 a Managing Director of PSG Equity, having been the CEO of several technology-enabled services businesses. 

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 ME 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 ME and is passionate about making a difference to the health and social care that is available to people living with ME.

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 ME to help run a two-year project and one of Philip's best friends at university has suffered with ME, and approached Philip to help her start and build The ME Trust, which merged with Action for ME 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 Nanopore 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 the University of Cambridge and a BSc in Biochemistry from Imperial College London.

Nirmala says: “Whilst I have not been personally touched by ME I was struck by the fact that there is so little understanding of the underlying genetic drivers for ME 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 ME.”

Wendy Lippmann is a civil servant who has also worked in the NHS and Adult Social Care developing strategy, implementing national policy and running projects and services. She brings a wealth of insight into these public services due to this range of experience.

Wendy also understands the challenges faced by people who have ME first-hand as her daughter was diagnosed with mild ME aged 17 after struggling for several years with unexplained pain and chronic fatigue during secondary school. This experience brought home how empowering it is to have a diagnosis to help explain the condition to others and draw on appropriate support. Wendy is delighted to support Action for ME in its mission to raise awareness about the condition, expand research and improve the quality of life for everyone affected by ME.

Ros Boyle became aware of Action for ME whilst looking for information and support for her son, who has had ME for several years. She says 'I found amazing advice and understanding from the charity both for myself as a carer and for my son. As a result I wanted to get involved to support the charity's mission and ensure those living with ME get the care and support that they need, whilst also looking for greater understanding of the disease and a cure.'

Ros has 30 years of experience in the voluntary sector in a variety of large and small charities with services across health and wellbeing, disability, young people, housing for the homeless and overseas development. Her expertise is in fundraising, particularly from Trusts and Statutory Organisations. She lives in Surrey with her family and has worked for YMCA East Surrey as the Fundraising and Development Manager for the last 9 years.

Colin Morgan: "I became an AfME trustee in 2025 after a year volunteering on the Public Affairs sub-committee. My interest in ME comes from my wife Kate having suffered for many years with a severe form of the disease. I’m a Professional Engineer and renewable energy geek, and have filled various technical and people management roles during my career.  I’ve worked in small and large organisations and for the past ten years in a consulting business that I started with a few colleagues and where my internal responsibilities as a director have variously included oversight on HR, risk management, quality management, H&S management and legal matters."

Sarah Anderson is Head of Policy and Influencing at Rethink Mental Illness, leading the development of policy priorities across a range of health and social care issues. She has 8 years of experience working in the charity sector including experience in communications and public affairs, and a master’s degree in Philanthropic Studies.

"I live with multiple chronic health conditions through which I have experienced the difficulties associated with a lack of support, understanding and high-quality research around a health condition and how this can impact someone’s quality of life. I look forward to bringing together my professional skills and personal experience to support better meeting the needs of people with ME/CFS in my role as a Trustee and on the Research Sub-Committee."

Beatrix Clark worked for many years in PR and communications representing clients such as the Royal Marsden Hospital, the Institute for Cancer Research, Lloyds Bank and BFI-funded education charity, Into Film, and as a freelance journalist specialising in travel and lifestyle.  She now has property interests and volunteers for national charity Family Lives and Barnet Youth Justice Service.

As the parent of a daughter suffering with mild ME/CFS, Beatrix has been shocked by the ignorance surrounding the condition, and the lack of available support or treatment.  “There’s a massive need to raise awareness and understanding of ME/CFS.  Action for ME is doing wonderful work - I’m honoured, as a trustee, to have the opportunity to directly support that.”

Katie Higginson has nearly 20 years’ experience in the charity sector, including at BBC Children in Need and as CEO of a local infrastructure charity. She is one of around 50% of Long Covid patients whose symptoms meet the diagnostic criteria for ME. After a spell mostly housebound and bedbound, she now works very part-time as a charity consultant and Associate Non-Executive Director on her local NHS Trust Board. Katie said: “I was shocked by how little help is available for people who are so profoundly ill. Action for ME is having an outsize impact in changing that, and I’m excited to bring my professional and lived experience to support their work.”

Alex Higgins has been part of Management Teams, Boards and Leadership Teams for c.15 years and as such brings a wealth of governance, operations, transformation and compliance experience to the charity.  Alex is Vice President, Strategic Programme Management at a global Academic and Scientific publisher, responsible for delivering some of the most strategically important transformation programmes across the group.  Alex has a strong personal connection to ME/CFS with a family member suffering from Long Covid for many years and as a result is particularly passionate about advancing diagnostics and treatment research to improve the lives of sufferers. 

Join our Board

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.

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