About Us
The ME Genetics Centre of Excellence is a collaborative network led by our Partnership Board, co-chaired by Sonya Chowdhury (CEO of Action for ME) and Professor Chris Ponting (University of Edinburgh). The Board brings together researchers from a range of disciplines alongside individuals with lived experience of ME, ensuring that scientific progress is grounded in both expertise and real-world insight.
Why did we establish the ME Genetics Centre of Excellence?
ME research faces major challenges, including limited funding and a shortage of researchers. Our network brings together researchers, charity representatives, and people with lived experience to drive ME genetics research forward. Currently, ME lacks a dedicated research focus or ‘home’. Genetics offers a starting point with the potential to drive wider research, including the identification of diagnostics and treatments. While genetics is our main focus, we actively work across and seek to expand into other research areas.
What do we do?
At the ME Genetics Centre of Excellence, we are building a foundation for lasting progress in ME/CFS research. Our work goes beyond individual studies — we focus on creating the conditions needed for world-leading, collaborative science to thrive. From shaping strategic funding priorities to fostering meaningful involvement from people with lived experience, our efforts aim to strengthen the entire ME research ecosystem.
Our main activities include:
- Advocating for a strategic approach to ME research funding and identifying new funding opportunities
- Strengthening collaboration among genetics researchers, ME researchers from other disciplines, and across career stages
- Creating opportunities for joint research, including partnerships with experts from other fields or disease areas
- Ensuring research quality and meaningful involvement of people with lived experience in ongoing projects
- Sharing updates on ongoing ME research with the wider ME community
What have we done so far?
Since its launch, the Centre has been driving collaboration, innovation, and visibility in ME genetics research.
In 2022, we hosted a high-profile symposium at the University of Edinburgh, bringing together leading researchers and advocates to share insights and spark discussion. The full event is available to watch on the Action for ME YouTube channel.
Our work has also opened doors to new partnerships — most notably with PrecisionLife. This collaboration led to the launch of LOCOME, a pioneering research project investigating the genetic underpinnings of ME/CFS.
Supporting the next generation of scientists is a core part of our mission. Through the Clare Francis Fellowship, we’re proud to fund Audrey Ryback’s PhD research, which explores potential serum factors that may affect mitochondrial function in people with ME/CFS.
In October 2024, we held a public webinar to share the latest developments and progress from across the Centre. If you missed it, you can watch the recording on YouTube.
Working together
