This month sees the release of a book which discusses the enormous suffering of thousands of patients in Australia and many more worldwide. The book describes how people's lives are made worse by medical ignorance and abuse which leaves them with lives of quiet desperation and immense suffering.
The author of the book, Western Australian artist, writer and patient advocate Jodi Bassett, who herself suffers from Myalgic Encephalomyelitis (M.E.) writes of the nature of this illness.
She also provides helpful information for anyone who deals with M.E. patients such as doctors, carers, friends and family members as well as patients themselves. Jodi discloses her own battles with the medical profession and how mistreatment has left her bedbound for the last decade. She recounts stories of disability and desperation which are at times harrowing.
But this book, entitled ‘Caring for the M.E. Patient,’ is most of all about how to make things better. It provides simple ways for patients and families to recognise what they are facing. This new book also provides information on how to test for M.E. for doctors, and guidelines for carers. The book also includes helpful check sheets to help patients measure their disability levels over time.
The Forward to this book was written by Dr Byron Hyde of the Nightingale Research Foundation in Canada. Dr Hyde is the world's most experienced M.E. expert and has studied both epidemics and individual cases of M.E. for over 30 years. Dr Hyde writes:
"There is so much false information that is picked up and disseminated.Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."
“Jodi is a very courageous young woman who not only runs one of the few balanced on-line M.E. world newsletters and websites but recently has completed a serious book on the subject of M.E. This book deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control. I recommend her book to all and wish it every best success."
This book makes it clear that politics and financial interests too often heavily influence or even control understanding of an illness. This can easily mean that patients too ill to speak out in more than a whisper become silent and isolated victims and have to struggle to be given basic respect, let alone proper care.
While this book is especially important for anyone dealing with M.E., it is also a timely reminder to all those who deal with illness and disability that it is always important to begin patient care with a willingness to listen.
Caring for the M.E. Patient by Jodi Bassett, and with a Foreword by Dr Byron Hyde, is available now in paperback, large-print paperback, hardcover, eBook and Amazon Kindle editions.
For purchasing information and bookstore links please visit: http://www.hfme.org
The HFME is dedicated to fighting for the recognition of Myalgic Encephalomyelitis based on the available scientific evidence, and for patients worldwide to be treated appropriately and accorded the same basic human rights as those with similar disabling and potentially fatal neurological diseases such as Multiple Sclerosis.
Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder. M.E. is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.
It can occur in both epidemic and sporadic forms. Over 60 outbreaks of M.E. have been recorded worldwide since 1934.
What defines M.E. is a specific type of acquired damage to the brain (the central nervous system) caused by an enterovirus.
It has multi-system involvement which is characterised by post-
encephalitic damage to the brain stem; a nerve centre through which many spinal
nerve tracts connect with higher centres in the brain in order to control all
vital bodily functions – this is always
damaged in M.E. (Hence the name