Voices from the Shadows
About 100 people attended the showing of the documentary film ‘ Voices from the Shadows’ held at The Forum in Norwich on Friday 2nd December. This moving film told the stories of severe ME sufferers and their carers and obviously as Jenny’s father it was both upsetting but also a call to action. The stories showed how many live Jenny’s life of hell, abandoned and ignored by health services. It certainly should be shown on national television. Unless you could live our lives, you would not believe that ME patients are so badly treated. On the film, some had died and that too will amaze people who are unaware that people do and can die. In the film, we went through the pain of their deaths and the anguish of the families. One of the most upsetting moments was a young woman, totally bed-bound, who lived in a darkened room and was sensitive to any sound. The authorities decided to section her under the Mental Health Act as a psychiatrist had persuaded social workers that the illness was all in her mind. What happened next I would have thought impossible in modern Britain but nothing surprises me any more. The police smashed down her front door, letting in the psychiatrist and the social worker. They turned on the light and obviously it was noisy. The authorities were unaware that the conversations were recorded by the ME patient. Seeing they came to ‘ section her’ the conversations showed that she was intellectually their superior and far more articulate. This counted for nothing and she was taken into a mental hospital and locked alone in a room. It took solicitors a week to get her out but the damage was irreversible and she died.
What the film showed was abuse at the hands of professionals and a catalogue of inhuman treatment and the disinterest of politicians and media in the lives of 250,000 in the UK whose lives are turned upside down by this disease. ME patients have to endure their doctors blaming them for not getting well and this rang true especially after Jenny’s treatment at the hands of the Norfolk and Norwich Hospital.
Everyone felt sombre at the end and the Lord Mayor of Norwich was visibly affected. It was a shame that none of the Norfolk MPs who were invited could attend. The event was put on by Invest in ME, a charity which campaigns for biomedical research into ME. Invest in ME is mounting a campaign called ‘Lets do it for ME’ and this was discussed during the evening. This is a patient-driven campaign to raise awareness and vital funds for a centre of excellence for translational biomedical ME research and treatment at the University of East Anglia. The centre aims to translate biomedical research findings to appropriate treatment for patients with ME, as rapidly as possible. We were also encouraged to write to The Chief Executive at Norfolk and Norwich about the offer to provide and fund an ME consultant from a London Hospital which the Chief Executive has not responded to.
The evening was a call to action and there was a real sense that we should be angry and no longer let those whom we love, to suffer in the shadows. Dr Leonard Jason, Director at the Centre for Community Research at DePaul University, wrote (talking of ME patients)
‘ by their grace we have entered a new terrain, one filled with the miraculous- the capacity to endure pain and the refusal to be stigmatized by a Kafkaesque, Orwellian health care system. Their courage and life-affirming stories challenge us to act. These ‘ voices from the shadows’ force us to recognise the needs of children and adults with ME and join their fight for a cure.’
Further information can be found at
plus a trailer for the film at http://vimeo.com/24683179