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Celebrating Trustees' Week 2023

November 06, 2023

Trustees’ Week is a time for us to come together to celebrate the achievements of nearly one million trustees across the UK.

The theme for this year is: Many voices. Working Together. With Purpose.

We want to use this week to recognise and thank our wonderful Trustees, and the time, support, and expertise they give to the charity. Our Trustees ensure that the Board has the necessary skills to govern the charity effectively and over half 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.

Ellie Bulmer and Shaun De Boo, two of our committed Trustees at Action for M.E., have openly discussed their experiences as Trustees, the roles they entail, and the aspects of our work they are most excited about.


Ellie Bulmer


Ellie, who is our newest Trustee, shared her personal and professional journey with us:

"I have been a Trustee with Action for M.E. for a very short time and the driver for me to join this charity was twofold. I crossed paths with this crippling disease many years ago and it made itself known in the form of exhaustion. A level of exhaustion that I had never experienced and one that saw me falling asleep every time I sat down. I could have slept around the clock. I had no energy and my ability to concentrate evaporated. My GP diagnosed me as suffering from ‘yuppie flu’, and I was put on anti-depressants.

I am passionate about horses and I own a couple which I compete at dressage and show jumping. It was the need to keep them going that pulled me through this disease. I absolutely believe I am one of the lucky ones who beat M.E. and recovered. It has left an indelible mark which every now and then reminds me that I can’t push myself as perhaps I think I can!



My career prior to becoming a Non Executive Director and Trustee has seen me primarily in Healthcare. I led the team within a private hospital as Hospital Director through the Covid pandemic. As a Trustee my role is to be generous with my support and offer up a different point of view and insights to further discussions drawn from my skills and expertise gained through my career. For me, it's about being a critical friend to ensure the charity is meeting the needs of the people it was set up to help, its beneficiaries."

Looking forward to the future, Ellie shares that she is feeling particularly excited about the development of the Healthcare Services, and opportunities to work with the NHS. She says:

"It feels as if we are at a very exciting point in the future of the Charity and I very much look forward to working with the team over the years to come."

Shaun De Boo

Shaun became one of our Trustees in February 2021 following encouragement from his daughter, who had been diagnosed with M.E. more than ten years before. Explaining why he became a Trustee, Shaun said:

“On my retirement after a career as a Chartered Accountant, I felt it was a great opportunity to use my skills gained working with business to support Action for M.E. and their vital work to help raise awareness and overcome the issues facing people with ME. It is also another way to support my daughter by showing a commitment to her and other people with M.E."

A Trustee is responsible for making sure that we, as a charity, are fulfilling our objectives. Before joining us as a Trustee, Shaun had previously advised charities and told us:

“I thought I understood quite a lot about charities and about M.E. but being a Trustee has been an education for me. I have learned more about the issues facing people with M.E. and have been encouraged by the charity’s vision, mission and strategy. Action for M.E., on a personal level, has given me the confidence to talk more about M.E. Now, when I meet someone new, I let them know that M.E. is a real issue and that a ridiculously small amount of research has been carried out on this long-term condition”.

As a Trustee, Shaun takes part in our quarterly board meetings to review the goals, achievements and challenges facing Action for M.E. He is on the board committees supporting finance & fundraising and policy & communications and helps us by meeting with staff and attending events from time to time when we think his skills and background will help.

When asked what excited him most about being a Trustee, he said:

“Two areas stand out for me: firstly, our support for research in the absence of public funding, which is so lacking and, secondly, the way Action for M.E. actively seeks to engage with government and media to both educate and press for change."

Shaun’s family also offer their support. His son ran the London Marathon in 2019 to raise funds for us and his wife, Liz, spends a lot of time making patchwork and crocheted items and runs an Etsy shop where she sells them, donating all profit to Action for M.E.


You can find out more about the events happening over this year's Trustees' Week here.