Journal of IiMER Volume 13 Issue 1 Invest in ME Research Anne Ortegren - A Year On It is a year since news came of the passing of Anne Örtegren. The lives of those who have passed away are placed in the memory of the living. A year passes and the shock of the news of Anne's death may have ebbed away somewhat - yet the void remains, covered by the memory of one woman whose courage, dignity and influence were evident always - and continue to inspire. Reading Anne’s Last Post - an articulate, reasoned and eloquent article that gives insight into the loss of this amazing person - it may seem that she was recounting the situation that she found herself in and reasons for her course of action. That, itself, would have been an enormous effort. Yet, with Anne, this article was also likely to have been written to help so many others in the future - so typical of Anne’s selfless actions. In her last post Anne wrote – “If you are a decision maker, here is what you urgently need to do: - You need to bring funding for biomedical ME/CFS research up so it’s on par with comparable diseases (as an example, in the US that would mean $188 million per year). - You need to make sure there are dedicated hospital care units for ME/CFS inpatients in every city around the world. - You need to establish specialist biomedical care available to all ME/CFS patients; it should be as natural as RA patients having access to a rheumatologist or cancer patients to an oncologist. You need to give ME/CFS patients a future.” Invest in ME Research (Charity Nr. 1153730) A year on. We would have liked to have written that things have changed, that a new path is opened, that Anne's experiences will never have to be repeated. We cannot state this. Our status report from summer of 2018, prior to the UK parliamentary debate on ME, highlighted a picture of wasted lives and wasted opportunities over these many years where little has changed, thanks to establishment apathy. Yet we remain hopeful of change coming - albeit far too slowly. Therefore, the charity is developing a new initiative that will build on Anne's influence and may, in some way, honour her memory. We will continue to arrange for the Anne Örtegren Memorial Lecture to be given at our annual international ME conference in. In memory of Anne we released the tribute to her from last year’s IIMEC13 conference DVD that occurred prior to the inaugural Anne Ortegren Memorial Lecture. Here, quite appropriately, a distinguished Swedish scientist – Professor Jonas Blomberg – spoke of Anne. Little did we know then that a year later we would be mourning the sad loss of Professor Blomberg himself. As we wrote last year - when we lose a friend we lose a part of ourselves. Anne's influence on the lives of others lives on. http://investinme.org/AnneOrtegren.shtml investinme.org Page 41 of 52

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