Hidden away in darkened, silent rooms, for years and even decades, lie men, women and children suffering a cruel and invisible injustice. Although they are 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 they 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, 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 professionals are frequently ignorant or misinformed about the illness and can inadvertently cause lasting harm to many patients. Internationally the situation may at last be changing as new biomedical research developments, particularly in the USA, Australia and Norway, are giving a more thorough understanding of the nature of this complex and serious illness. However, it will be many years before attitudes and policies are changed in the UK and in the meantime lives are being destroyed. 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 andProfessor 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 focuses on the stories of five individuals who, following a diagnosis of ME or CFS, suffered abuse and severe mistreatment at the hands of medical and social services professionals. This resulted in the deaths of two of the young women and total loss of mobility for the children shown. (After these two young women died post mortem results showed inflamation of the dorsal root ganglia.) Many similar stories have gone completely untold, as many patients are isolated and silenced by fear; fear of having children forcibly removed by social services and enforced ‘treatment’. Since making the film, which does not show the worst of what we were told, we have found that other patients have gained enough confidence to tell a few people what they have been through – the abuses they have suffered at the hands of professionals as a result of widespread misunderstanding of the illness, misinformation and misrepresentation by the media.
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 patient – 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/CFS 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.
This is a particularly distressing state of affairs because of the many young people involved. They are vulnerable and at the mercy of adults and society at large. But many patients, both young and older, are condemned to lost lives; lives lived not just in total isolation and pain, but blamed, threatened, frightened and subjected to harmful conditions by the very professionals who should be caring for them. A recent comment from the husband of a deceased ME patient in the Netherlands was, “How schizophrenic that NICE and the NHS recognises patients are as ill as those with ‘multiple sclerosis, SLE, rheumatoid arthritis, & congestive heart failure’ – but treats many worse than dogs!”
This is a deeply moving and compelling film bearing witness to hidden and forgotten lives: the ‘voices from the shadows’ of those ME patients whose lives are passing by, invisible to the public, very severely ill, and too often neglected or abused by professionals.