Journal of IiMER Volume 13 Issue 1 Invest in ME Research continued to arrange the international ME conferences that have provided a platform for education about ME - with DVDs produced of all the conference presentations which have formed a historical record as well as providing knowledge of the latest research. The Colloquiums and Conferences have always had an international atmosphere – emphasising that international collaboration in research and treatment are necessary. Our original conferences have now developed into a unique conference week in the heart of London with delegates and colleagues and friends coming from over twenty countries around the world. ME Conference Week 2019 now includes a conference for young/early career researchers; a dinner where young researchers can meet more experienced scientists; a two day closed research Colloquium where researchers can share ideas and discuss and plan and collaborate; a researchers' dinner where more discussions can be had; a pre-conference dinner which allows a special gathering of researchers, clinicians, media folk, politicians, ME patient group representatives,carers and patients to interact; a public international conference; a post-conference dinner which allows researchers and patient groups to discuss further after the main events have finished and plan the next steps; and an annual general meeting for the European collaborative patient alliance. A small charity with wonderful supporters has achieved this. When people view charities as being "the largest" or "the main" organisations it is as well first to determine how those adjectives are measured. Is it by income, by number of staff, by the amount of media presence? Or by the amount of income spent on research, or on the least spent on admin and salaries, or on the achievements and ideas that actually are realised? It is achievements that count - always - and hopefully the ideas that actually are realised, where possible. The supporters of the charity may not get the publicity they deserve but actions speak far louder than words, or awards. In the recent parliamentary debate on ME, Invest in ME Research produced a document which Invest in ME Research (Charity Nr. 1153730) investinme.org Page 5 of 52 summarised the status of ME. It also laid out a bold vision for research – including proposing that £20 million be allocated every year for five years to kickstart biomedical research and support the foundations that have been laid. It is this vision that a small charity and dedicated supporters brings to the world of ME. We were happy to contribute to the parliamentary debate that originated from the early work performed by a supporter of Invest in ME Research who is a constituent of the SNP MP Carol Monaghan, who set up the debate. Being an independent charity allows a genuine approach to tackling the problems with ME that benefits patients and their families. As Dr Ian Gibson - our conference chair for all these years - has said "We can change things" As we host our largest ever “invite-only” closed research Colloquium (with more than 130 invitations being sent out) then the name of our charity truly becomes the main calling for all interested in resolving this disease. For our fourteenth conference, and our ninth international researchers' Colloquium, what better slogan to use at this point in time than the one that this small charity has uniquely been promoting for so long. Time to #InvestinMEresearch Kathleen McCall CHAIRMAN INVEST IN ME RESEARCH We would like to thank our friends from the Irish ME Trust, Norges ME Forening and the Open Medicine Foundation for donating to help fund the administration costs of the conference.

6 Publizr Home

You need flash player to view this online publication