We posted a picture with the slogan 'Trick or Treat?' on Halloween never dreaming there were indeed some more dirty tricks going on again behind the scenes of the M.E./CFS Epidemiology and Genomics Alliance (MEGA). This should not surprise us as MEGA is a project of the CFS/ME Research Collaborative (see document by The Young ME Sufferers Trust). This time it relates directly to the first ME charity to make a public statement in support of our counter-petition (Opposing MEGA). Invest in ME Research, set up as a charity in 2006, is run by people of the utmost integrity and has been driving forward translational biomedical research (research to establish diagnostic tests and medical treatments for this neurological / neuroimmune disease) with great vision, dedication, determination. You can find out all about them and their extraordinary work on their website, which hosts a wealth of information and educational resources - http://investinme.org/index.shtml The following are extracts from a statement published by Invest in ME Research today (full statement is here - http://investinme.org/IIMER-Statement-1611-02.shtml) "We would expect that many in the CMRC would be supportive of Invest in ME Research’s attempts to build a strategy of biomedical research into ME and be respectful of our views on research into ME, as being in the best interests of patients suffering from this disease and their families. So it comes as a surprise that, in recent days, Invest in ME Research has been made aware of an email to a member of our advisory board from Professor Stephen Holgate – chair of the CMRC – regarding the MEGA petition [1] and concerning the charity’s support of the sentiments expressed in the OMEGA petition [2] which opposes the MEGA proposal. The email trail that we have seen – which may or may not be part of a larger email discussion that we have not seen – originates with an email from a CMRC board member to Professor Holgate suggesting that he (Professor Holgate) consider writing to the whole of Invest in ME’s medical advisory board regarding our position on the MEGA proposal. Indeed, the title of the email that we have seen is “Scientific Advisory Board of Invest in ME”. The original email also states that Invest in ME’s “enthusiastic support” to the OMEGA petition is one of the reasons why that petition had over 2000 signatures. All of this has been carried out without the knowledge of the Invest in ME/Research chairman or trustees and with no direct contact being made to the chairman of Invest in ME Research." The statement concludes - "Regarding the allegation in the email trail that Invest in ME’s “enthusiastic support” to the OMEGA petition is one of the reasons why that petition had over 2000 signatures - In our statement [4] we wrote “We support the sentiments expressed in the OMEGA petition.” The jump in support numbers for the OMEGA petition actually came after the Science Media Centre issued a press release regarding the FITNET trial [5]. Reactions to that press release [6] and the following media circus, which gave an inordinate amount of coverage to the FITNET trial and a member of the MEGA team and vice-chair of the CMRC, was the cause of an increase in support for the OMEGA petition. We feel the implications surrounding this matter are serious and that is why we have sought clarification and an explanation from Professor Holgate. We do find it unacceptable that our advisory board is contacted without our knowledge in matters that relate to the charity’s affairs. We hope that there was no orchestrated intent to somehow manipulate Invest in ME Research's decisions and policies." The above are extracts from a statement published by Invest in ME Research today (full statement is here - http://investinme.org/IIMER-Statement-1611-02.shtml) Invest in ME Research was the first charity to give a view, when asked, about the MEGA proposal, but others so far include, Irish M.E. Trust, Hope 4 ME and Fibro Northern Ireland, The Young ME Sufferers Trust, MEadvocacy.org, as well as several independent advocates and support groups. Links on our home page - https://opposingmega.wordpress.com/ In case you missed it, here is a document originally published August 2014 - Shining A Light On The CMRC Setup (Minutes And Emails Obtained Under FOI) A Report from Tymes Trust - the inside story of the UK CFS/ME Research Collaborative - http://www.tymestrust.org/pdfs/shiningalight.pdf It's high time UK cleaned up its act. Thanks to everyone like Invest in ME Research for their courage and integrity and joining us in Opposing MEGA - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs