From the website of the ME/CFS Epidemiology and Genomics Alliance, 29 March 2017. Blog by Sonya Chowdhury.
Note from MEA medical adviser Dr Charles Shepherd: I am not a member of the MEGA Research team/planning group or the MEGA Patient Advisory Group (PAG)
AN UPDATE FROM THE SCIENTIFIC TEAM AND PATIENT ADVISORY GROUP
First the bad news: unfortunately our preliminary application to Wellcome, submitted at the start of the year, was turned down. No feedback was given so we don’t know why it was rejected.
The good news is that, in the last couple of weeks, the Scientific Team and the Patient Advisory Group have prepared a new outline application for further funding. With a short deadline it was tough going at times, but having had substantial input, the Patient Advisory Group are very pleased with the submission.
A very productive meeting between Prof Esther Crawley, Prof Julia Newton and the Patient Advisory Group was held early last week with some important points agreed:
Both the Scientific Team and the Patient Advisory Group agree that it is absolutely essential that we collect data from those most severely affected by M.E., and those affected long term. This will require home visits which are very expensive, and the financial limit of the current application will not cover this. However, it was confirmed at the meeting that we will submit an application to this current funding call with a full commitment that further applications will be made to include home visits. By establishing the MEGA bioresource and proving to funders that we can collect data from patients in clinic, the chances of us successfully accessing further funding are hugely increased.
Post-exertional malaise will be a prerequisite for inclusion in the bioresource. If successfully funded, a detailed definition of post-exertional malaise will be determined primarily by the Patient Advisory Group in conjunction with the ME/CFS specialists on the Scientific Team.
Those whose samples are collected for the bioresource will have their diagnoses and severity of illness confirmed and recorded at point of collection. Several case definitions will be used to categorise patients and it will be clear which case definition any given patient fits into. When analysing results of tests undertaken on samples from the bioresource, the Scientific Team will be clear which subset of patients the results specifically relate to (we will address this in more detail in a forthcoming blog post).
We have updated our Q&A page to highlight the points above.
PATIENT ADVISORY GROUP UPDATE
Three Patient Advisory Group members recently decided to leave the group. Their much valued contributions will be missed and their reasons for leaving have been taken on board.
Since their departure, valuable progress has been made and we are happy to report that, despite the initial rushed formation of the Patient Advisory Group and the pressure caused by tight application deadlines, things have really picked up and are beginning to fly. Enthusiasm among Patient Advisory Group members is high, the Scientific Team remains focused, and we all wait with fingers crossed for a positive outcome to this preliminary funding application.
As Prof Newton says, “MEGA represents the opportunity to develop the largest ME bioresource in the world. This will give researchers the material to address some of the big questions that are currently unanswered in ME, to not only help UK patients but the global patient community.”