Journal of IiMER Volume 10 Issue 1 IiME organised and hosted its sixth annual Invest in ME International ME/CFS conference. This had the theme of “The Way Forward for ME – A Case for Clinical Trials” to reflect the need for clinical trials of treatments for ME which could make a difference to the lives of patients. The 6th IiME conference (IIMEC6) was the first time that Professor Mella and Dr Fluge presented on ME/CFS in public. They made a lasting impression on us and we knew straight away that these two fine Norwegian gentlemen and their research were something special and worth keeping an eye on. We are honoured to have had the chance to follow their progress year after year. The charity organised the first Biomedical Research into ME Colloquium in 2011 – named the Corridor Conference – bringing together researchers from different continents to discuss and share knowledge about ME – and also some researchers new to the ME field. BRMEC1 was a new and unique addition to IiME’s conference events. For the first and only time the British Medical Journal (BMJ) accepted an invitation to the conference and their representative participated in the panel discussion. Prior to the conference the charity arranged a special meeting of the APPG in parliament and took along a number of our researchers who we had brought June 2016 to London for the IIMEC6 conference. This allowed MPs to be given true facts about the disease and the research required. Invest in ME continued to tackle the unjust media portrayal of ME and made an official complaint to the Press Complaints Commission after a series of unsubstantiated and biased articles appeared in major newspapers in a seemingly coordinated media attack on sick and vulnerable patients. Although, predictably, the PCC did not rule in the charity’s favour the bias and inaccurate reporting in these misleading and orchestrated articles and the unprofessional and flawed editorial control were clearly shown by Invest in ME to be present in the media – something which would be symptomatic of poor journalism shown later by the so called Leveson Inquiry. We also wrote to the Lancet about the PACE trial and continued to argue that flawed theories should not be funded by the public. In 2012 the three areas which have needed attention and which formed the basis of our work in order to benefit the public and society have been - funding for biomedical research, education about ME and campaigning/lobbying to ensure that ME is taken seriously and that patients receive care from healthcare staff who actually understand the disease. To this end the 2011-2012 was a year where the charity did much work to support our objectives. Many of these Invest in ME (Charity Nr. 1114035) www.investinme.org Page 14 of 77

15 Publizr Home

You need flash player to view this online publication