A compassionate and moving exposé, bearing witness to the devastating consequences of psychiatric prejudice and medical ignorance about ME (Myalgic Encephalomyelitis), one of the most prevalent illnesses of the 21st Century.
Hidden away in darkened, silent rooms for years or even decades, are men, women and children suffering a cruel and invisible injustice. Although shockingly ill many are disbelieved, denigrated and blamed, suffering medical neglect and sometimes even abuse by the very professionals who should be caring for them. The isolation imposed by the illness means that the daily reality of these sufferers' lives remains invisible. Their courage and determination remain unseen and unheard as many are too ill to make their plight known, and others live in fear of retribution. Few doctors 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.
ME (also known as Chronic Fatigue Syndrome or CFS), which affects up to 250,000 people in the UK, has been systematically denied and misdiagnosed. Medical ignorance is endemic, causing irrevocable harm to many patients. International biomedical research has been stifled; deliberate misinformation and prejudice are widespread; irrevocable harm is being caused by inappropriate and sometimes enforced 'treatment'. The situation is getting worse. However, new medical research is bringing hope and highlighting this travesty, but it could be many, many years before change occurs in the UK. Meanwhile, lives are being destroyed and children and young people remain especially vulnerable.
The film presents interviews with medical experts and people with ME/CFS 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 recognised 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, these tragic circumstances are the consequence of a situation where research funding follows political policy rather than medical need.
A profoundly moving, intimate and disquieting film by two carer/patient advocates – a mother and son. It reveals the enduring love, courage and determination of five sufferers and their families as they struggle for health, acknowledgement and respect.
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