In response to a question on Phoenix Rising forum today, Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, had this to say about MEGA (The M.E./CFS Edpidemiology and Genomics Alliance) a project of the CMRC (CFS/ME Research Collaborative) - "The more I see of communications coming out of the CMRC and MEGA team the clearer it is to me that they have no real idea what they are doing other than trying to secure money for certain researchers. The token involvement of a patient group at a point in time when one assumes the first grant application has already been written and submitted to local administrative offices is a farce. It reveals a complete lack of respect for the patient community. As far as I can see the initial bid will be for the amount they are allowed to bid for, which will be quite small. They have made it clear they have no real idea what they are going to do with that money other than set up in direct competition with the existing Biobank which is about five years further down the line and needs continued funding. This seems to me destructive and irresponsible. This is no sense a 'collaborative' venture'. It is driven by self-interest as far as I can see. I do not hesitate to say that because it is the norm in science these days - one of the reasons I retired to do something else. To my mind the CMRC is not a 'big tent'. It is almost totally isolated from the international research community. As far as I know it has no involvement in European interactions and precious little support from the US, if any. I actually think the ME community would be better off without it if it is going to behave in this sort of incompetent and destructive fashion. And I have no axe to grind on this. None of it makes any difference to me doing my birdwatching and philosophy. I just get angry when people behave like this. If I was involved in a charity I would not wish to be associated with the CMRC. But I respect those who feel differently about the best way forward." Jonathan Edwards, Today at 12:51 PM #373 - http://forums.phoenixrising.me/index.php?threads/new-mega-study-website-30-november-2016.48118/page-19#post-794723 Regarding our counter-petition Opposing MEGA, he had said - https://opposingmega.wordpress.com/2016/10/20/comment-by-professor-jonathan-edwards-about-omega-petition/ "I was very concerned that a counter petition of this sort would be an own goal. However, reading this I cannot really fault it and am actually impressed by much of the wording and argument. The up front reference to researchers whose work has been shown to be substandard may seem inflammatory but we are past that now and I think being to the point is a strength. The point that MEGA is not the only game in town is well made. From my point of view I have yet to see any information that would convince me that any original thought has gone into the project. I am not a fan of Big Data. They jumped the gun and it is entirely legitimate to say so because it is an insult to the patients’ intelligence. So I think I would encourage all members to sign. If the petition is there and is making a fair point good numbers of signatures would have impact." Jonathan Edwards has been a great advocate for science and ME/CFS patients since getting involved via the Invest in ME Conference events of 2013 and subsequently joining in discussions on the Phoenix Rising ME/CFS forum. He made a notable contribution to support for release of raw data from the PACE trial to enable reanalysis of claims of recovery from psycho-behavioural therapies. On that topic, a paper was published yesterday and we commented on its relevance to MEGA and why we are Opposing MEGA here - https://opposingmega.wordpress.com/2016/12/14/highly-misleading/ Catch up with all our blogs here - https://opposingmega.wordpress.com Thanks for your support, it means a lot to us and our children. We must stop this insidious bio-psych-social movement in its tracks. It has already gone too far. MEGA is but a tip of the iceberg. To sign Opposing MEGA - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs