Who made the film?
The film was made between 2009 – 2011 by Natalie Boulton and Josh Biggs – the mother and brother of a chronic ME sufferer. Josh is a young professional freelance editor and cameraman. (Josh’s details www.isophia.co.uk) Natalie was an artist/teacher and is a full time carer for her daughter who has been ill since 1990. This is the first time we have worked together on a film and we are both first time director/producers. The making of the film was undertaken by our family. We are very grateful to all those who have helped in various ways. The music for the film was specially composed, recorded and kindly donated by Emmy nominated composer David Poore. Full film credits are here
‘Voices from the Shadows’ was born of utter desperation. Having struggled for nearly 20 years to care for my daughter, I found that we were caught in a trap.
Like most patients and their families I believed the medical profession had this disease in their sights and was working at a cure. With an awful shock, after attending Invest in ME and MERUK conferences, I realised that was not the case. NOTHING – absolutely NO biomedical research was being funded by the Medical Research Council in the UK at that point. Although significant biomedical research was being done in other countries, that research was just being totally ignored in the UK. The illness, which had been taken seriously, identified and studied for decades, had just disappeared off the radar. Instead research funds were being allocated to psychiatric/behavioural management programmes of fatigue in CFS, using up millions of pounds that could have been used to more fully identify the physical causes and develop more effective treatments for ME.
The illness that trapped my daughter and her friends had been ‘disappeared’!
This was being supported by government policy and the media, with the help of the mental health section of the Science Media Centre, was doing an excellent job of trivializing the illness and denigrating patients. Nowhere in the public domain was there any sign of the terrible severity of the illness I saw driving many intelligent, creative, positive and courageous young people, into lives of devastating dependency, isolation, pain and steadily deteriorating health. Not only that, but the abuse suffered by some patients who were being harmed by professionals was going totally unrecorded and unnoticed. Patients were, and are, suffering and dying invisibly…..
Between 2007-9 I worked on a book for the charity Invest in ME – ‘Lost Voices from a Hidden Illness’ – which started to give patients a ‘voice’, a chance to speak for themselves about their lives and experiences. This opportunity was particularly appreciated by young people who had been severely ill for 15-20 years or more – since childhood. I was helped by my son Josh who taught me the computer techniques I needed.
We realized that one of the problems is that severely ill patients with ME become completely isolated and invisible to the world at large. Few people see them when they are housebound and bed bound. They are too ill to take part in most research projects and so very few people are aware of the severity and nature of the illness. When ‘Lost Voices’ was finished we realized that more needed be done. Josh offered to help with making what was intended to be a short film – using his professional expertise and our close involvement with the subject.
We started filming, not really knowing what direction the film would take. Sadly our work on ‘Lost Voices’ did not prepare us for the shocking revelations that came to light when we spoke to patients, carers and doctors: the abuse of children and patients. The project grew and evolved in a direction we hadn’t foreseen. As with ‘Lost Voices’ we worked very closely with the families in the film, many of whom we had known for years, to make sure they were accurately represented and in a collaborative effort we were given access to personal documentation which had not previously been publicly available. See more about this under the ‘Reflections’ tab above.
The film has now been translated into eight languages. Details about some of the people who worked on the translations can be found on the ‘contributors’ page here.