ORYVE presentation

Voices from the Shadows

‘Voices from the Shadows’ shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. These were filmed and edited between 2009 and 2011, by the brother and mother of an ME patient in the UK. It shows the devastating consequences that occur when patients are disbelieved and the illness is misunderstood. Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the severe amplification of symptoms that can be caused by increased physical or mental activity or exposure to stimuli, and by further infections. A belief in behavioural and psychological causes, particularly when ME becomes very severe and chronic, following mismanagement, is still taught to medical students and healthcare professionals in the UK. As a consequence, situations similar to those shown in the film continue to occur.