Building on the success of DecodeME, the Genetics Centre of Excellence tackles the critical challenges of insufficient research funding and a shortage of researchers in the ME field.
This virtual network of researchers, charity representatives and people with lived experience advocates for more strategic research funding and strives to foster stronger collaboration among ME genetics researchers and beyond.
It also aims to create new partnerships by engaging experts from outside the field.
Although still in its early stages, the Centre organised a symposium at the University of Edinburgh (more information below, add link).
The work of the Centre also allowed us to build new relationships, such as our partnership with PrecisionLife which led to the launch of the LOCOME project.
The Centre also oversees the Claire Francis Fellowship, supporting the next generation of ME researchers.
The Genetics Centre of Excellence is overseen by the Genetics Centre of Excellence Partnership Board, co-chaired by our CEO, Sonya Chowdhury, and Prof. Chris Ponting at the University of Edinburgh.
The Partnership Board is composed of individuals with lived experience and researchers from various specialties.
You can find out more about current members of the Board and activities, here [link to come]
We also held a webinar in October 2024 to provide an update on the latest activities of the Genetics Centre of Excellence.
You can watch the recording, here.
Following the exciting launch of DecodeME, we held our first ME Genetics Research Summit on September 14 2022.
This is part of Breakthrough-ME, our plan to rapidly grow research and funding, alongside the MRC Human Genetics Unit at the University of Edinburgh.
The Summit bought together researchers interested in ME, people with ME, carers, and potential funders to drive collaboration in this field.
The hope is to develop a 10-year programme of ME/CFS genetics research.
The Summit topics included;
The Summit was recorded and is available to watch on our YouTube channel.
You can visit our news story that covered the ME Genetics Research Summit for further details and information on the topics and workshops the Summit covered.
The LOCOME (long Covid and Myalgic Encephalomyelitis Diagnostics Stratification) project is a two-year initiative led by PrecisionLife®, in collaboration with Action for ME and the MRC Human Genetics Unit at the University of Edinburgh.
The project is funded by a £622,000 grant from Innovate UK’s Advancing Precision Medicine programme.
By using data from the DecodeME study and PrecisionLife’s combinational analysis methods, the project aims to stratify individuals with ME and long Covid into subgroups based on distinct variants, linked to a single gene associated with disease mechanisms.
These subgroups will map to specific symptom patterns and experiences and help generate disease “signatures” and stratification tools. This can help to:
- Participating in regular project and scientific advisory board meetings to contribute to governance and decision-making.
- Providing input on the study design and data analysis, including insights from anecdotal evidence to help identify promising treatments for repurposing.
- Offering feedback on how findings are interpreted and shared with the wider community.
