Lost Voices from a hidden illness
Wild Conversation Press is proud to announce its collaboration with the charity ‘Invest in ME’ in publishing Lost Voices from a hidden illness compiled, edited and designed by Natalie Boulton.
This book combines a visual and textual auto-ethnography by thirty-one chronically ill individuals suffering from the medical condition Myalgic Encephalomyelitis (ME) and their carers, Natalie’s own explanation of the politics surrounding the treatment of that condition, and supporting texts by a number of experts in the field. This campaigning book combines respect for its contributors with a passionate desire to cut through the obfuscations that have led to the misinterpretation of ME as a behavioural condition rather than a physical disease. The book’s diverse material is brought together and presented through a highly creative approach that owes much to the editor’s original training as a visual artist.
In testimony to the extraordinary courage of those suffering from this shamefully neglected medical condition and their carers, the main body of the book consists of independent sections for each of the thirty-one contributors and their carers. These are framed by an Introduction by Natalie, written from the perspective of a carer with over thirty years experience of ME, a Forward by Dr Leonard Jason – Vice President of The International Association of CFS/ME and Director of the Centre for Community Research, DePaul University, Chicago – and contributions from Dr Vance Spence (Chair –ME Research, UK) and three other experts: Dr John Chia, Jane Colby and Annette Whittemore.
Dr Vance Spence writes of the book:
‘Reading the stories in this valuable collection reminded me of the words of the Chief Medical Officer’s report on ME/CFS of 2002 that the “severely ill are severely over-looked; just ignored and invisible”. In practical terms this means that the most severely affected patients are often disenfranchised from the health care system. The condition continues to be shrouded in mystery and metaphor and many of the sickest patients rarely see a nurse or doctor; a situation that is surely unique and disgraceful. Six years on from that report, little has changed; the condition remains invisible to all but the immediate family, largely unnoticed by health-care professionals and, most importantly, the biomedical research community’.
This 120 page, 21x29.5 cm soft bound book is printed in full colour and can be obtained directly from Invest in ME at www.investinme.org