“I feel like I wake up with a mattress on me most mornings. When I wake up with post-exertional malaise, there is an elephant sitting on the mattress. He stays there for days. He steals my words and fills my brain with wet cotton wool and wraps his trunk around my neck, so I struggle to swallow.”
That’s the experience of someone with Myalgic Encephalomyelitis (ME), a fluctuating, neurological condition affecting an estimated 250,000 people in the UK, and around 17 million people worldwide.
Even in its mildest form, ME/CFS (within the NHS, a diagnosis of chronic fatigue syndrome or ME/CFS is often given) can have a significant impact on an individual’s life, and not just on their health. A lack of understanding and awareness about ME/CFS means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals, and employers.
The ME/CFS Epidemiology and Genomics Alliance (MEGA) has been set up to try and change this by improving our scientific understanding of ME/CFS.
We are a group of 15 UK scientists and four patient charities (Action for M.E., the Association of Young People with ME, the ME Association and ME Research UK, with Action for M.E. taking a representative role) who have come together to establish a big data research study of over 10,000 adults and 2,000 children and young people.
Our core aim is to investigate the biology of ME/CFS.
This exciting, highly ambitious project is the first of its kind in the UK, and a potential game-changer. It will have to pass through rigorous peer-review in order to secure funding, and requires a multidisciplinary team of some of the UK’s most distinguished scientists, with direct input from people with ME/CFS and their carers.
We are recruiting a Patient Advisory Group of 12 to 15 adults with ME/CFS, their primary carers and others with an interest in ME/CFS: find out how you can apply to join.
Additionally, there will be a children and young people’s advisory group, which is an existing group working with the University of Bristol.
MEGA will apply for funding to set up a Bioresource that will be available for all researchers to use. Using samples and data from participants, we will apply a range of biological tests. Analysing this with cutting edge technology, we can then begin to create a picture of the biological process involved in ME/CFS. This will provide the foundation for better diagnosis and targeted biological treatment in the future.
“Knowing more about how biological and environmental factors affect ME/CFS symptoms could show us what we might be able to do to change the course of ME/CFS over time, or even how to change the likelihood of the onset of ME/CFS symptoms in the first place,” says MEGA team member, Prof George Davey-Smith. “Additional data in the related fields of epigenetics and metabolomics can tell us about pathways which might be involved, which can also be useful for considering how to alleviate symptoms. At the very least, a large scale study will give proof of principle about the degree to which these -omics approaches are applicable to advancing ME/CFS research.”
MEGA team members (in alphabetical order)
Sonya Chowdhury, Action for M.E., representing the patient charity members of the UK CFS/ME Research Collaborative Board
Prof Esther Crawley, University of Bristol
Prof George Davey-Smith, University of Bristol
Dr Rick Dunn, University of Birmingham
Prof Maria Fitzgerald, University College London
Prof David Ford, Swansea University
Prof Stephen Holgate, University of Southampton
Prof Jim Horne, Loughborough
Prof Paul Little, University of Southampton
Prof Paul Moss, University of Birmingham
Prof Julia Newton, University of Newcastle
Prof Carmine Pariante, King’s College London
Prof Chris Ponting, University of Edinburgh
Prof Caroline Relton, University of Bristol
Prof Colin Smith, University of Brighton
Patient Advisory Group members are also part of the MEGA team.
You can read more about each member on the MEGA TEAM page.