Well, here’s Professor Holgate’s response to our recent email. Do I feel heard? No. What about you?
Dear Spoonseeker (I am not sure whether this is the correct title but I hope this reaches you all),
Thank you for your email. We all recognise the concerns that are held about the MEGA Project and value your input. We are very appreciative of the enthusiasm being shown to pursue an exciting ‘omics-based research project in the field of M.E. and the issues that you have raised. We are soon (next week I hope) will be issuing a description of what MEGA comprises on a new website and will also have a frequently asked questions (FAQ) page which will be regularly updated. The latter is aimed at addressing the majority of questions that have been raised in your and other emails through the FAQs. Involvement of people with M.E. at the core of MEGA will be essential through an Advisory Group of people with M.E. and their carers.
As yet the first grant outline has not yet been submitted. We will do our very best to create the most competitive application, but even with this there is certainly no guarantee of funding. Please be assured that we will definitely involve the M.E. community in the proposal. As you will have noted I have brought the very best scientists from across the UK to assemble this application. It will be a real team effort. We need everyone’s support to help with this otherwise it will fail at the first hurdle.
Thank you again for expressing so much interest in our endeavour. Finally, I should add that I am not a CFS/M.E. researcher myself but someone who has realised we must make inroads into the causes of this (these) distressing and serious disorders.
Professor Stephen T Holgate CBE, FMedSci
MRC Clinical Professor of Immunopharmacology