The new website for the ME/CFS Epidemiology and Genomics Alliance (MEGA) biomedical research study has been launched today. There are lots of strong opinions about this project so get involved and make it the research we really need.
The MEGA website has the following information about the trial:
- Biographies of MEGA Team Members
- Why we need the MEGA research study
- Blogs by the scientists involved
- A Q&A section answering questions raised within the M.E. community
- Getting involved in the Patient Advisory Group (PAG) – applications now closed
- A glossary of the scientific terms used
MEGA is still very much in the planning stages. I’ve seen some comments that it’s not right to ask people with M.E. to support a study when the “ins and outs” of it haven’t been decided yet. If it had been all sorted out and then put to the M.E. community, we’d rightly be complaining that all the decisions have been made without us, and as patients surely we all want to have the concerns of the community listened to.
I do support the study but know there are some serious concerns over it – enough to have a petition against it. Personally, I share some of these concerns but I think we need to steer it from within by getting involved and having our say. I agree with some comments I’ve seen on how the PAG needs to be completely independent of the CMRC and the charities involved, so I won’t be applying to the PAG myself but would like to encourage others to get involved.
I hope the experts on M.E. research in the community will take this opportunity to make sure the patient views are represented and heard. See the “Get Involved” page of the MEGA site to find out more: