We are delighted to announce the establishment of the Strategic Leadership Board for the World ME Alliance. This initiative marks a significant step forward in our mission to combat myalgic encephalomyelitis (ME) on a global scale. The aim of this board is to promote an efficient and dynamic decision-making process for the Alliance, which will enable us to initiate more projects, making our work more impactful and sustainable.
In June this year, the World ME Alliance’s membership ratified a new Memorandum of Understanding. And this July, four representatives from our member organizations were elected as board members to stand along side our Co-Chairs and Head of Advocacy and Communications. These individuals bring a wealth of experience from across the globe and a deep commitment to advancing the cause of ME awareness, research, and advocacy.
Our new Strategic Leadership Board
Sam Pearce
Sam has had ME since 1992 and represents MELCuSA (ME and Long Covid Unite South Africa) at the World ME Alliance. With a background in intercultural communication, she has worked as a comedy producer, a carnival director, a refugee advocate, a climate activist and a longhaul African travel blogger. She writes a column for South African news outlet the Daily Maverick called Dispatches from Bed and curated the Global Voice stories for World ME Day 2024. With her colleague Mlindeni Gabela, she is the co-founder of SICK Pride.
Petr Homolka – Vice Chair
“Having started and co-run a patient’s organization in the Czech Republic after a friend of mine got sick with ME, I have learned first hand what troubles and obstacles ME patients face in their everyday life. It has also showed me how much value an organization fighting for their rights can bring and I can’t wait to help the World ME Alliance reach its full potential and become an even stronger voice representing the ME community all around the world.”
Saskia de Wit
“When my daughter went down with ME/CFS, I realized how devastating this condition is due to the physical restrictions, mental burden and complex stigmatization. With time, energy and some useful background at hand, I am seeking ways to contribute to a better quality of life for people with ME/CFS. I am member of the grants committee for biomedical research in the Netherlands and the working group for revision of the Dutch clinical guidelines. When MECVS Nederland joined the World ME Alliance, I became involved in the alliance, now as part of its strategic leadership board.”
Martin Hippe
Martin Hippe is a lawyer who worked at a renowned media law firm in Hamburg and toured as a DJ and music producer until his retirement in 2017. In 2018, his illness worsened to such an extent that he became bedridden and had to be fed artificially. In 2021, his condition improved and he became a Community Ambassador for the Open Medicine Foundation, his first role as an activist for ME/CFS. In 2022, he founded the ME/CFS Research Foundation with Joerg Heydecke, then Mirame Arts in 2023. He is once again active as a music producer and works with Mirame Arts and the World ME Alliance for people with ME/CFS.
Sian Leary – Head of Advocacy and Communications
“I have been working with the World ME Alliance for over 3 years, helping it to grow into the vibrant, collaborative space that it is today. I am thrilled that the membership has elected this new Strategic Leadership Board and hopeful for the stability and capacity it will bring to our work. As a person with ME myself, I have first hand experience of the stigma and lack of care that is still so prevalent across the globe. But working with this Alliance and seeing the initiatives taking place in so many different countries brings me hope. Building on my experience across community, research and communications projects, and the collective experience and skills of this Board, I am really excited for what the World ME Alliance will do next.”
Sonya Chowdhury – Co-Chair
“I became the Chief Executive of UK-charity, Action for M.E., nearly 12 years ago. A year after I joined, my youngest son got a chest infection just after his 11th birthday and was subsequently diagnosed with ME so I have direct experience of living with ME as a parent/family and seeing the devastating impact it has on lives. I co-founded the World ME Alliance ten years ago after one of my Board members reached out to a couple of other national organisations to work more collaboratively together. Today, with 30 members, I am excited to be uniting globally to improve the lives of people with M.E.”
Emily Taylor – Co-Chair
“I bring over two decades of expertise in the non-profit and government sectors to my role as CEO of Solve M.E. Since joining Solve in 2016, I have driven impactful change, including securing $1.25 billion for Long Covid research and advocating for increased NIH funding and serving as co-chair of the World ME Alliance. My connection to the mission is personal, inspired by my mother’s battle with ME/CFS and chronic autoimmune conditions. I am excited to continue fostering critical partnerships and advance treatments for ME/CFS by serving on the Alliance strategic leadership board.”
The formation of the Strategic Leadership Board is a testament to our ongoing commitment to uniting the global ME community and amplifying our collective voice. We believe that with their guidance, the World ME Alliance will be better positioned to tackle the challenges ahead and make significant strides toward our goals.
The World ME Alliance’s overall priorities will continue to be set by all our member organizations, ensuring that our new Board uses their expertise to push forward a truly global agenda.
We look forward to the innovative ideas and fresh perspectives that our new board members will bring to the table. Stay tuned for updates on our upcoming projects and initiatives.
