Shattered: Life with M.E. [Paperback]

‘Reading your book has restored my self-respect. Before I blamed myself; now I see that society is to blame for making me feel bad about my illness. It is beautifully written. It made me cry. But it is just what everyone in my position needs.’ A reader of Shattered.

A powerful account of life with M.E. from the eyes of a sufferer, describing the feeling of a ‘life interrupted’ through a variety of voices, Shattered will offer empathy, hope and support to sufferers and their families as well as giving practical advice on how to live with chronic fatigue.

It is March 1987. There is a flu bug doing the rounds in Edinburgh, which floors Lynn Michell and her two sons. Instead of pulling out of their ill and exhausted state, none of them gets better. It takes three years for Lynn's elder son to recover. She and her younger son are still ill 16 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 – which 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 as such it is a tour de force. While the first person snapshots of sufferers of all ages paint an accurate picture of "life interrupted", readers will find hope,
humour and ways of surviving as they recognise others who live and feel and react just as they do.

Dr Vance Spence writes in the foreword:
"Dr Lynn Michell has written a remarkable book – the product of her own experience as both an ME sufferer and a medical sociologist. (She) 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 the voices 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."

Lynn Michell's purpose is unwavering throughout: to help others with this cruel illness find acknowledgement and validation in a cruel world.

''It is March 1987. There is a flu but 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 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 fifteen years later.''

In 'Shattered', Lynn Michell tells of haunting episodes in her own life with M.E., 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 M.E., 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 acknowledgment and validation in a cruel world.

"Reading this book has restore my self -respect. It is beautifully written. It made me cry. But it is just what everyone in my position needs."
Young M.E. sufferer

Lynn Michell Ph.D. is a qualified Educational Psychologist who has herself suffered from M.E. following a virus. Her two sons and three of her husband’s colleagues also suffered; she and one of her sons were poleaxed by the illness for more than ten years, the other son for three years. She has written this book to explain the different experiences of M.E. sufferers with the aim of dispelling the stigma that surrounds this illness and to offer hope of a light at the end of the tunnel.

'It is stupid to call it Chronic Fatigue Syndrome. It should be called the Forever Dead Syndrome.'
KEITH JARRETT, Jazz/Classical pianist. Ill with ME for four years.

The most important contribution this book can make is to portray what ME is really like from the inside. At least as relevant as all the discussions of causes, contributory factors and symptoms is an accurate account of what it is really like to live with the illness. This is where we should start. This is Phil talking about the experience of ME:

'It would be difficult to imagine being any worse. I was the stage of crawling on my hands and knees at times. I remember trying to answer the phone and not being able to get there quickly enough because I was crawling. I was confused by really simple things, and muddling my words and not being able to finish sentences. Just a complete mess coginitively. There was a great deal of weakness in my limbs, and a drained complexion and pallor. I was bedridden. I mean I was in bed for 23 hours out of 24. I was sleeping at least 18 of those 23 hours. Extremely exhausted, extremely emotional, depressed certainly: partly a reaction to physiological illness, partly, I'm sure, due to alterations in my central nervous system. And yes, at times, suicidal.'

ME broke upon the public consciousness a couple of decades ago as a mystery illness, an enigma or condition which was probably all in the mind. While some of this mythology lingers, a recent report by an independent working group to the Chief Medical Officer of England recognises it as a 'genuine illness [which] imposes a substantial burden on the health of the UK population. Improvement of health and social care for people affected by the condition is an urgent challenge,' It affects women and men of all ages and from all walks of life and has a more comprehensive impact on life quality than most almost any other chronic illness. It can take years to reach even a partial level of recovery, yet we do not know what ME is, its cause or causes remain controversial, and treatment is elusive. It will take an imaginative leap and a rare kind of lateral thinking to piece together the puzzle that is ME.

This is not the place for a critique of medical hypothese about the causes of ME, a detailed description of the enormous range of symptoms, or a list of the largely unsuccessful conventional and complementary treatments reported in clinical trials and anecdotal evidence. There are other books that do this job - and do it well - so only a brief account of the current state of play is included below. Instead, this book is about people's experiences of ME, a collective account of what it is like to live with the illness. This is the human story, not the medical one.