Shattered

Author

Lynn Michell

Publishers

Thorsons, May 2003

Introduction

Some copies of Shattered are still available to order on Amazon.co.uk.

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 book 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

Read an article about Dr Michell in the Scotsman newspaper.

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

Foreword

by Dr Vance Spence, Chairman of ME Research UK

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 Michell has written a remarkable book — the product of her own experience as both anME sufferer and a medical sociologist. For the first time, the authentic voices of people with ME are heard. Lynn Michell 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 Michell’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.

Informing The Future project

ME Research UK wanted Shattered to be read by as many health professionals, and members of the public as possible to allow the “authentic voices of people with ME” to be heard and “the central themes which dominate this illness” to be understood.

Thanks to the generosity of ME patients and their families, copies were donated to many of the University Medical Schools and Nursing Colleges/NHS Trust libraries in the UK, because these institutions are educating the health professionals of the future.

The following medical schools and libraries have received a copy of Shattered through this scheme:

• Aberdeen: Medical Library, Foresterhill Hospital, University of Aberdeen
• Belfast: Queen’s University Medical Library, Mulhouse Building, Belfast
• Birmingham: Barnes Library, University of Birmingham Medical School
• Bristol: University of Bristol, Medical Library, School of Medical Sciences
• Cambridge: University Medical Library, Addenbrooke’s Hospital, University of Cambridge
• Canterbury: Templeman Library, University of Kent
• Cardiff: Nursing and Healthcare Studies Library, Heath Park, University of Wales College of Medicine
• Dundee: Faculty of Medicine and Nursing Library, Ninewells Hospital, University of Dundee
• Edinburgh: Erskine Medical Library, University of Edinburgh
• Edinburgh: Library, Queen St, Royal College of Physicians of Edinburgh
• Edinburgh: Royal Infirmary Library, New Medical School, University of Edinburgh
• Glasgow: Central Library, Southern General Hospital NHS Trust
• Glasgow: Medical Library, Gartnavel General Hospital, Glasgow
• Glasgow: NHS Library, Glasgow Royal Infirmary
• Glasgow: Wolfson Medical School Library, University of Glasgow
• Holywood: Sullivan Building, High Street, Holywood, County Down
• Hull/York: Clinical Sciences Library, Hull York Medical School, Science Park, University of York
• Huntly: Central Public Library, Huntly, Aberdeenshire
• Leeds: Health Sciences Library, University of Leeds
• Leicester/Warwick: Faculty of Medicine Library, University of Warwick Library, Coventry
• Leicester: Clincial Sciences Library, University Library, Leicester Royal Infirmary
• Liverpool: Sydney Jones Library, Medical Sciences, University of Liverpool
• London: Library of the Weston Education Centre, King’s Denmark Hill Campus, King’s College London
• London: Medical School Library, St Bartholomew’s Hospital, West Smithfield, London
• London: The Royal Free and University College Medical School, Gower Street, London
• London: St George’s, University of London, Cranmer Terrace, London
• Manchester: John Rylands University Library of Manchester, University of Manchester
• Newcastle: Walton Library, Medical School, University of Newcastle
• Nottingham: Greenfield Medical Library, Queens Medical Centre, University of Nottingham
• Oxford: The Cairns Library, John Radcliffe Hospital, Oxford
• Sheffield: Health Sciences Library, Manvers Campus, University of Sheffield
• Southampton: The Health Services Library, Southampton General Hospital and University of Southampton
• St Andrews: University Library, University of St Andrews
• Worcester: Institute of Health and Social Care library, University College Worcester
• Slovakia: University Library, Martin
• Ireland: A substantial number of copies have been placed in Irish public libraries. Full details can be had by contacting the Irish ME Trust at 00 353 1 4013629.