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SHATTERED. Life with M.E. Lynn Michell

Thorsons.  May 2003

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SHATTERED is the new book by Dr Lynn Michell. Published by Thorsons (HarperCollins), it will be available in May 2003. The book which contains a Foreword by Dr Vance Spence, and an Appendix on "ME/CFS - the Research Perspective". As the Foreword says,
"For the first time, the authentic voices of people with ME are heard, their narratives brought together expertly into a rich tapestry that highlights the central themes which dominate this illness: the lack of a recognised diagnosis; the scepticism of medical professionals; the lack of support from family and friends; the deserts of fatigue and pain; the loneliness involved in the search for help and empathy…..These are not the voices of professionals with careers to promote;  rather they are the voice of real people with terrible stories to tell. While people with ME and their carers will read this book and empathise, it should also be read by health and social care professionals for the insights that it gives."

SHATTERED.

Life with M.E. Lynn Michell

Thorsons.  May 2003

'It is March 1987. There is a flu bug doing the rounds which floors me, my sons and three members of my husband's academic department. But instead of slowly pulling out of our ill and exhausted state, none of us gets better. The other adults take between one and ten years to regain their health. It will take three years for my elder son to recover. My younger son and I are still ill sixteen years later.'

In SHATTERED, Lynn Michell tells of haunting episodes in her own life with ME, a "still life" suspended by a savagely capricious illness, as well as the stories of many others men, women and young people. These voices convey the complexity of ME, an illness which deals out a slightly different hand of cards each time it strikes. This tapestry of voices is held together by Lynn's own intelligent, loving, and often angry commentary. And her purpose is unwavering throughout: to help others with this cruel illness find acknowledgement and validation in a cruel world.

"Reading this book has restored my self-respect. It is beautifully written. It made me cry. But it is just what everyone in my position needs." Miriam. Young person with ME

"This is a timely and powerfully-written hook and Lynn Michell is uniquely qualified to write it." Bernard MacLaverty, author of Grace Notes

"Inspiring stories, not simply of broken lives, but of survival and hope in the face of terrible adversity." Dr Vance Spence

Cover shows Blue Head by Graham Dean, Private Collection (The Bridgeman Art Library, London). Author photo by Nye Stenning  ISBN: 0-00-715503-4

Copies can be ordered from Amazon: http://www.amazon.co.uk/exec/obidos/ASIN/0007155034  -

Foreward by Dr Vance Spence, Chairman of MERGE

I can think of no other illness where such a powerful schism exists between those who suffer from it and those whose responsibility is to care for them. How can it be that an illness that affects between 100,000 and 200,000 persons of all ages in the United Kingdom and maybe as many as one million people in the United States of America is no longer referred to in medical textbooks, is not cited in medical research indexing systems and rarely features in the syllabus of undergraduate education in medical schools? Why have the experiences of these patients been largely ignored, their testimonies somewhat undervalued, even ridiculed, and their requests for assistance met often with prejudice and disbelief? An answer to this conundrum can be found in this scholarly account of the ME enigma.

Dr Lynn Michel has written a remarkable book  - the product of her own experience as both an ME sufferer and a medical sociologist. For the first time, the authentic voices of people with ME are heard. Lynn Michel threads their narratives together expertly into a rich tapestry that highlights the central themes which dominate this illness: the lack of a recognised diagnosis; the scepticism of medical professionals; the lack of support from family and friends; the deserts of fatigue and pain; the loneliness involved in the search for help and empathy. These are not the voices of professionals with careers to promote;  rather they are the voice of real people with terrible stories to tell. While people with ME and their carers will read this book and empathise, it should also be read by health and social care professionals for the insights that it gives.

Only scientific research into the causes and treatment of ME can prevent experiences like those described in this book. Comparatively little biomedical research has been done due, in part, to the economics of medical research funding. In addition, ME has been subsumed by the all-inclusive, heterogeneous diagnostic construct termed chronic fatigue syndrome (CFS). For most ME patients, the CFS term is insulting – akin to tuberculosis being renamed chronic cough syndrome – as it focuses on one symptom, “fatigue”, which is the hallmark of a range of illnesses with different underlying physiological causes. Nevertheless, the construction of the CFS label has resulted in a disproportionate allocation of funding towards psychosocial models of the illness. It has been left to a small minority of pioneer researchers - funded by smaller charities such as MERGE -  to identify the physiological causes of ME and try to find a cure. Thanks to their efforts, some intriguing new developments are taking place in a variety of research centres throughout the world.

Lynn Michel’s book reminds us that until specific treatments are found real people will be affected by ME, often in catastrophic ways. Yet, the tales are not simply about broken lives  - they also tell of survival and hope in the face of terrible adversity. Although people with ME may be SHATTERED, the  stories in this book offer them the strength and courage to rebuild their lives.

 

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