Journal of IiME Volume 8 Issue 1 PERVERSELY DARK May 2014 A new film from Norway – about severe ME – from Pål Winsents. It is perverse that many formerly able bodied persons have to lie in complete darkness and isolation. And, indefinitely so. In each of their respective rooms, in two different places around the greater Oslo, Norway area, lie ME/CFS patients Kristine and Bjørnar sequestered in protective total darkness. In both cases, the tiniest amount of mental, social, or physical effort is detrimental and can completely overwhelm their bodies’ minimal energy reserves and function. Consequently, only health care assistants and immediate family are permitted whispered access into their isolation in order to feed, medicate, and tend them. Film maker Pål Winsents and Fenomen Film remarkably were given access into these patients’ dark realms and permitted to ‘syphon’ some of Kristine and Bjørnar’s stories and their precious infinitesmal life energy for the making of this important and unusual film. While medical experts in Norway and internationally debate and test their many theories in attempts to understand and discover a cure for ME/CFS in order to get its patient group up and out into light and life again, many such lives whither way as the many years roll by. During the six years of filming Kristine and Bjørnar, the Fenomen Film crew was astounded by these patients’ non-despairing fortitude, courage, and level of intellectual reflection despite the lack of proper stimuli or external battery life recharging them when confined to be in the dark with a great unknown. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 34 of 52

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