Following much criticism about the lack of detail in the proposed MEGA study publicity, the make-up of the research panel and an e-petition opposing the study, people with ME are now being invited to join a Patient Advisory Group.
They are recruiting 12 to 15 adults. The closing date for applications is 9am on Tuesday 13 December 2016.
Aim of the group
To provide people with ME/CFS, their carers, and people with an interest in ME/CFS, with a full voice in advising and collaborating with the MEGA team to inform all stages of the MEGA study to better understand the biology of ME/CFS. Advisory Group members are asked to contribute to the MEGA study by:
- actively engaging in the design of the MEGA study and to be participants in its conduct
- identifying any potential practical issues for participants, questions, gaps or concerns about the study and to comment on study documents and procedures
- contributing to, and informing, the planning process for securing funding, recruiting participants and disseminating results.
The MEGA study
MEGA’s “big data” study will use the most up to date technology to investigate DNA, RNA and other molecules to uncover the distinctive genetics, epigenetics, proteomics and metabolomics of people with ME/CFS, using a very large number of samples.
Eventually, it is hoped there will be enough biological data, known as biomarkers, to give a “handprint” that distinguishes one subtype of ME/CFS from another. They will use these biomarkers to create diagnostic tests for ME/CFS and to identify, from their biological profile, which new treatments are appropriate for which patients.
Read more about the study