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 consented entrance 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 attempt to understand and discover a cure for ME/CFS to get its patient group up and out into light and life again, many such lives wither 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.
Without giving away too much, Perversely Dark is also a film about love, perseverance soccer, presents, and Christmas songs, as well as a human transformation one would not believe it if not seen with one’s own eyes.
Director and film company
Perversely Dark, the documentary film by director PÃ¥l Winsents from Norway and Fenomen Film, recently premiered at Victoria Movie Theaters in Oslo, Norway on May 12 with 350 people. And the premiere was one of the headlines on National TV Broadcaster the same evening. Perversely Dark follows the somber sequestered lives of two ME/CFS patients and their survival struggle to regain health and activity.
Perversely Dark is Pål Winsents’ ninth documentary film and his second thematic ME/CFS film uniquely exploring the lives of this little known patient group while bringing their stories and voices into society’s light. His first ME/CFS themed film Få Meg Frisk (Heal Me!) featured partially functioning Anette Gilje, ME/CFS patient and former General Secretary of the Norwegian ME Association, through her desperate journey for treatment and proactive steps. In Perversely Dark Pål Winsents ventures even further and captures the anguishing worse case stories of two full-time ME/CFS bed ridden patients and their families’struggles
