MEGA research for M.E./CFS:
MEGA research for M.E./CFS:
Why this petition matters
Please note: We will be moving to a MEGA website in the next week or two so that we can better manage content and improve access to information for those that don't wish to sign up to support this study but are keen to hear the latest news. We plan to continue posting regular updates and blogs and to ensure there is the facility to ask questions and engage with the MEGA team. We will also be posting information about how you can become part of the patient advisory group soon. Working with the researchers, this group will inform the application and protocol for the study.
The website will be announced on the UK CFS/ME Research Collaborative webpage soon: https://www.actionforme.org.uk/research/uk-cfsme-collaborative/
We are the M.E./CFS Epidemiology and Genomics Alliance (MEGA) and we want to carry out a potentially game-changing biomedical research study.
We are trying to understand more about the biology of the chronic neurological condition, Myalgic Encephalomyelitis (M.E., often diagnosed within the NHS as chronic fatigue syndrome or M.E./CFS). If we do this, we think we may be able to develop new treatments. We also think we may be able to target treatments more effectively for those that will benefit.
We are doing this by developing a research application and securing funding for a biomedical “big data” study of 12,000 men, women and children with M.E./CFS in the UK, plus healthy controls.
A “big data” study investigates, in terms of DNA, RNA and other molecules, the distinctive genetics, epigenetics, proteomics and metabolomics within a certain group, using a very large number of samples. Such studies are the latest trend in population-based scientific research and are the way to generate the most useful data and the most productive research.
MEGA was established following a Grand Challenge workshop convened by the UK CFS/M.E. Research Collaborative.
We know that people with M.E./CFS experience different symptoms at different times, and that these symptoms fluctuate over time and in terms of severity. So it is quite possible that the umbrella term M.E./CFS contains more than one illness with more than one underlying cause. So far, definitions have been based on symptoms which may not be related to the underlying biology. We want to investigate not just the causes and underlying biology of M.E./CFS, but also its different types (sub-phenotypes) which may be caused by different underlying mechanisms. This may eventually enable development of new diagnostic tests and new treatments for each sub-phenotype.
A study of this scale will require considerable funding but we are not asking for your money. Instead, we are asking for your voice.
MEGA is working on putting together an application to mainstream funders to take this project forward. The first application will be submitted in January 2017 as an outline application. For this to have a high chance of success, we need evidence that patients support MEGA.
By pledging your name to back this biomedical research, you are showing mainstream research funders that MEGA has your support, and helping to persuade them that they should support it too.
Please back this potentially game-changing biomedical research for people with M.E./CFS by signing this petition to #makeitMEGA
When you sign, you will be automatically receive emails whenever we update this page with details about MEGA and its work, blogs from the scientists involved, and notification when recruitment starts for the study itself. One of the biggest challenges that funders will expect MEGA to tackle is how 12,000 people with M.E./CFS plus healthy controls can be recruited to participate in the study – it’s ambitious, but achievable.
This research will be the first of its kind and MEGA is committed to meaningful engagement with people with M.E. and those that support them. This will include establishing two patient advisory groups, one for adults and one for children and young people with M.E./CFS.
Patient advisory groups are vital as they support the research team, advise on research methodology (for example, providing advice on effective methods to contact, recruit and maintain study participants), and help researchers interpret results.
Thank you for your support.
Please note that after subscribing, you may be asked to make a donation. This is from Change.org and not from the MEGA group.
MEGA is Prof George Davey-Smith, University of Bristol; Prof Chris Ponting, University of Edinburgh; Prof Colin Smith, University of Brighton; Prof Caroline Relton, University of Bristol; Tony Bartlett, Somalogic; Dr Rick Dunn, University of Birmingham; Prof Julia Newton, University of Newcastle; Sonya Chowdhury, Action for M.E., representing the patient charity members of the UK CFS/M.E. Research Collaborative Board; Prof Andrew Morris, University of Edinburgh; Prof David Ford, Swansea University; Prof Esther Crawley, University of Bristol; Prof Paul Moss, University of Birmingham; Prof Jim Horne, Loughborough University; Prof Maria Fitzgerald, University College London; and Prof Paul Little, University of Southampton.