Voices from the Shadows

Film synopsis

Hidden away in darkened silent rooms, for years and even decades, lie men, women and children who suffer a cruel and invisible injustice. Although shockingly ill many are disbelieved, denigrated and blamed, suffering medical neglect or even abuse by professionals.

Their courage and determination remain unseen and unheard as many are too ill to make their plight known, or are silenced by fear of retribution if they do speak up. Few professionals are willing to speak out to protect them, since by doing so they risk damage to their careers and livelihoods. It is often left to carers, to partners and parents, to act as advocates.

This illness, (which affects around 190,000 – 250,000 people in the UK) has been systematically denied and misdiagnosed. Medical ignorance is endemic and is causing irrevocable harm to many patients, but at last international biomedical research is exposing this travesty. However, it will be many years before attitudes and policies are changed. In the meantime lives are being destroyed and children and their families remain especially vulnerable.

Voices from the Shadows is located somewhere between factual documentation of the medical and psychiatric abuse of medically ill individuals and intimate witnessing of extraordinary personal acts of resistance in the face of that abuse. It sets out to make visible the reality of the suffering indicated by Nancy Klimas, a leading AIDS and ME/CFS physician and Professor of Medicine and Immunology, in the New York Times (15th October 2009): “I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses I would rather have HIV”.
The film presents interviews with medical experts and people with ME and their carers, together with archive and other material provided by them in a collaborative effort. All involved testify to the shocking severity of this physical illness and challenge the deeply unethical professional conduct of sections of the medical and the psychiatric professions who deny the biological basis of a neurologically debilitating, severe, chronic and occasionally fatal illness, even though it has been officially recognized as such by the World Health Organisation for over 40 years. The film shows how children and young people have been coerced or forced, under threat of removal from their parents and/or admission to psychiatric wards, to undertake exercise programmes that have resulted in years and even decades of bedridden isolation, often in darkened rooms, suffering long-term paralysis and even death. As one of the medical experts involved makes clear, this tragic situation is the consequence of a situation where research funding follows political policy rather than medical need.

As an act of witness the film draws on the trust built up between the filmmakers – a mother and son both directly involved in the care of a long-term ME sufferer – and the participants. This enables them to present intimately revealing interviews and sound recordings made by patients themselves, documenting examples of the abuse of young people by medical and psychiatric authority in the UK. Almost unbelievably, some of this harrowing material directly echoes the abusive use of psychiatry to silence political dissidents in the former Soviet Union. Here, however, the abuse serves to enhance the professional and economic status of a small minority of professionals.

The film does not attempt to set out the complex and nuanced medical evidence that demonstrates that ME is an organic medical illness, since that is available elsewhere. Instead it largely focuses on showing, as directly as possible, the very real physical and emotional suffering that is hidden, denied or suppressed by professionals whose sole justification is that their abusive actions are “for the patient’s own good”. The film clearly and simply explains some of the confusion and factors contributing to this dire situation. The medical experts who appear in the film leave the viewer in no doubt that there has been a persistent and cynical redefinition of medical categories and models by those who have a vested interest in perpetuating the present state of deception. This situation is exacerbated by large sections of the media in the UK, who are complicit in the dissemination of inaccurate information, denigration of patients and trivialization of the illness.

‘Voices from the Shadows’ is a deeply moving, compelling and shocking film.

 

Recent Developments
Since the film was finished in May 2011 twenty six of the best international medical specialists in the field have published new criteria (The Myalgic Encephalomyelitis: International Consensus Criteria – July 2011) for diagnosing, naming and researching the illness. These were developed from the Canadian Consensus Criteria and are an attempt to clear up some of the confusions and misdiagnosis which have resulted in so much harm and abuse, as shown in Voices from the Shadows. Unless this expertise is listened to and acted on by the Government, NICE, the National Health Service  and the Medical Research Council, as well being taken on board by the media, there will be little hope of change in the UK.