It was a project birthed in hope. Pal Schaathun, a Norwegian filmmaker would document what he hoped might be the end of chronic fatigue syndrome (ME/CFS). That, unfortunately, turned out not to be but Schaathun ended up documenting – in strikingly beautiful fashion – the next best thing. He managed to vividly portray the needs, hopes and desires of a community desperately yearning for health as it embarked on its first real shot for success.
Schaathun followed a Norwegian oncologist, Oystein Fluge as Fluge and his colleague, Olav Mella, embarked on a major clinical trial. The two doctors found, to their surprise, that a chemotherapeutic and autoimmune drug called Rituximab had produced duo remissions for a few ME/CFS patients with cancer.
As several positive preliminary trials rolled out, the small ME/CFS research community jumped into action as well, producing 11 studies focused on Rituximab or the part of the immune system it was believed to be impacting.
In the film, we get to watch Fluge in action, as he hurries from lab to lab and patient to patient, as he gets lost on the road, watching the news of the trial on the TV with his family and friends, as he meets with colleagues, etc. It’s a touching and personal portrayal of the man behind the Rituximab effort.
Schaathun uses patients in the trial and those awaiting the results of the trial – to vividly demonstrate just the impact this disease has. From teens stuck in their homes, to adults unable to walk down the street without crashing – the awful strangeness and the devastation this disease leaves in its wake is clearly portrayed. So is the courage and sheer stick-to-itiveness of those who have it. They’re coming to terms with their limitations, getting out when they can, thrashing their bodies on exercise studies: they’re a determined bunch.
The trial failed, but even in its failure it produced some interesting results. Some patients on Rituximab did dramatically improve – just not enough of them (not nearly enough) for the drug to be approved. Even more patients on the placebo significantly, but temporarily, improved, demonstrating once again how powerful that response can be. A significant subset received no benefits at all.
Above all, the film is a reminder of the remarkable thing Fluge and Mella did – and how remarkable the Rituximab trial itself was. Two oncologists with no connection to ME/CFS, in a small Scandanavian country without a history of ME/CFS research, somehow managed to birth the largest drug trial in ME/CFS’s history. Twenty-four Norwegian researchers and five hospitals ended up participating. The Norwegian advocacy community turned out in spades and many patients from around the world and the Norwegian government contributed.
The failure of the trial dashed the hopes of many – including the bedridden teen who’s reaction was wrenching – but the Rituximab effort was not. It remains a shining example of what we as a community can accomplish. Another Rituximab will show up at some point, and when it does, my guess is that we will similarly discover resources within ourselves we didn’t know we had, allies we didn’t know existed, and support from places that had been closed to us.
Thank you to Norway for showing us that and thanks, to Oystein Fluge and Olav Mella for your courage and determination and to Pål Schaathun for producing the most visually striking portrayal of ME/CFS yet.
Left Out: Directed and filmed by Pål Schaathun, Producer: Jonathan Borge Lie, UpNorth Film Film editor: Morten Øvreås Composer: Kato Ådland