Our Partnership Board
Meet the scientists and advocates shaping the future of ME genetics research through our collaborative governance model.
By uniting expert researchers and people with lived experience of ME, we’re building a platform for research that is both strategic and truly meaningful.
Third Sector Leader
Sonya Chowdhury
Sonya is CEO of Action for ME and has been since 2012. She is also a co-investigator of the Decode ME study and co-chair of the World ME Alliance. Sonya also chairs the PPI group for DecodeME. Prior to joining Action for ME, Sonya worked in senior management roles for leading children’s charity Barnardo’s where she was Head of Business Support and National Lead for the Family Strategic Partnership.
Researcher and DecodeME Principal Investigator
Chris Ponting
Chris is Chair of Medical Bioinformatics and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Cancer, University of Edinburgh. He is the Prinicipal Investigator of the Decode ME study. Chris has been on Editorial Boards of Genome Research, Genome Biology, Human Molecular Genetics, Annual Review of Genomics and Human Genetics. He pursued his research at the University of Oxford before moving to Edinburgh in 2016.
Co-Investigator and Person with ME
Andy Devereux – Cooke
Andy has a lifetime’s experience of ME/CFS, having developed mild ME/CFS as a child and with severity increasing over time to where, in his 50s, he is now 95% housebound. He is a founder, and for seven years committee member, of Science for ME, an online discussion forum; has had several patient representation roles with different research teams; and is a DecodeME co-investigator, management team and Patient and Public Involvement steering group member.
Future Leaders Network Representative
Luke Marney
Along with an undergraduate background in neuroscience and an MRes in biomedical science, Luke was pursuing a PhD studying ME/CFS genetics before stepping back due to long COVID. He is passionate about advancing research in ME/CFS and supporting the next generation of scientists in the field.
Researcher
Hayley Arron
Hayley’s PhD compared ME/CFS and Long COVID by assessing their inflammation and coagulation status. Working closely with both patient communities throughout her research gave her valuable insights into patient experiences and challenges, leading her to continue work in this field.
Advocate and Researcher
Helen Baxter
Helen has experience of working with people with severe and very severe ME and is an advocacy worker at 25% ME Group. Her research interests, on which she has published, include ensuring people with very/severe ME are facilitated to participate in research. She was a DecodeME Research Team Member and provides PPI to the LOCOME Project.
Advocate and Person with ME
Emma Shorter
Emma (she/her) brings over a decade of experience living with ME to her role on the Board. She draws on her experience of co-founding #MEAction Scotland and the Edinburgh Refugee Sponsorship Circle, and past work for a women’s rights organisation. Emma hopes to channel her skills and experience into accelerating genetic research into ME, while keeping people with ME at the heart of decision making.
Advisor and Person with ME
Opal Webster – Philp
Opal has been a patient advisor to the CFS/ME Research Collaborative (CMRC) with 30 years lived experience of CFS/ME. Before she was struck down with ME, she was a Training Manager at the University of Southampton where she met and worked with Professor Sir Stephen Holgate, a world renowned immunologist. Their association led him to establish the CMRC 9 years ago, which has focused on campaigning for more biomedical research into ME/CFS, gaining funding of £3.2 million for the first worldwide genetic study (DecodeME). She also wrote the book pictured above.
Action for ME advisor and volunteer
Olivia Elliot
Olivia is a volunteer with Action for ME where she advises the CEO on strategy, partnerships and fundraising to advance biomedical research for M.E. Olivia works in development finance for The International Finance Corporation and has previously spent 10 years living in Africa working for the Gatsby Foundation, the private trust of Lord David Sainsbury. Olivia has a First Class degree from Oxford in Politics, Philosophy and Economics and an MBA from I.E. Business School, Madrid. Olivia’s husband has had mild/moderate M.E. for 14 years which has a colossal impact on their young family.
Advocate and Person with ME
Kelly McLellan
Kelly brings over 30 years experience of living with ME to the board, having first become ill whilst doing a D.Phil in Biochemistry at Oxford. He was convenor of the Edinburgh ME Self Help group and participated in the Action for M.E.’s ‘Living and learning with M.E.’ project which led to Action for ME obtaining funding for his peer-mentoring idea. He was involved with MentorME from its conception to its conclusion. Kelly became the first client without MS to become a trustee of the MS Therapy Centre Lothian (now called Compass). He is also involved in LOCOME as a PPI (Patient and Public Involvement) representative with ME.
Advocate
Ann West
In the past 12 years, both Ann’s aunt and daughter have developed ME and are severely and moderately/ severely affected. She was shocked to discover that there is little medical understanding, support or quality research for such a debilitating illness. She says: ‘A Centre of Excellence offers the opportunity via the collaboration of research and patient partnerships to weave the disparate threads together and start to see the picture, that is the condition, emerge, enabling treatments to be devised to let patients recover their lost potential.’
Researcher
Caroline Dalton
Caroline is associate professor of neuroscience and genetics at Sheffield Hallam University, where she is Theme Lead for Living Well with Chronic Disease at the Advanced Wellbeing Research Centre, and leads the Health and Disease group in the Biomolecular Sciences Research Centre. Her research interests include the investigation of the molecular mechanisms underlying conditions such as schizophrenia, Long COVID, and ME/CFS. Recent studies based at the centre include laboratory-based experiments to investigate the effect of drugs on epigenetic markers in cell models and clinical trials of interventions for Long COVID.