ME/CFS Bookstore - Our Favourite ME/CFS & Related Books
Autism: Pathways to Recovery by Amy Yasko, PhD
Dr Amy's book is for all people with neuro-immune disorders, and represents the vanguard of personalized medicine through understanding your own genetics. It costs about $50 on amazon sites, but is offered here FREE. This book is highly recommended!
Severe ME/CFS: A Guide to Living by Emily Collingridge, person living with severe ME/CFS
This book is not available through any store. You may purchase it from Emily's affiliated site, listed at the bottom of this synopsis, or by clicking on the image of the book.
At the age of just 24, having had ME for 18 years, I found myself spiralling into a level of illness that was both shocking and overpowering in its severity.
" I had no idea that modern medicine could allow such suffering."
I lost the ability to swallow, to speak, to see, to move.
I was doubly incontinent, often paralysed, tube fed and in unbelievable pain, only just relieved by high dose morphine. My nausea was so extreme that it had to be treated with drugs normally reserved for patients undergoing chemotherapy. I could bear no stimulation; light, sound, touch or another person's movement felt like an assault. At times I didn't recognise my own mother and was confused about where I was. And yet, despite the seriousness of my condition (which brought me close to death), it was hard to find much needed advice on dealing with the relentless symptoms, endless practical problems, intense emotions and strain on relationships. Over time, however, I learnt a great deal about the ways in which quality of life can be improved and a little more comfort achieved. So when I improved enough to use a laptop I decided to share this hard won knowledge - and anything else I could find out - with others also stuck in the nightmare. ". - Emily Collingridge
The result was Severe ME/CFS: A Guide to Living.
Severe ME/CFS: A Guide to Living is the first comprehensive reference book to exist on severe ME. It is attracting attention around the world and has been highly acclaimed by those with severe ME, their carers, relatives and friends as well as professionals and charity representatives.
“the book every patient with severe ME has been looking for” Vikki George, patient
“an absolute MUST read… it could literally change your life” Chris B, carer
“this guide has it all” Liza-May Marshal, patient
“the most comprehensive support document imaginable” Christine Hudson, carer
“a book no severe ME sufferer should be without” Frances Goodchild, patient
“a lifeline” Sarah McLeod, carer
“Finally everything you wanted to know about severe ME but were afraid to ask” Tarsam Singh, patient
"After many years of being housebound and bedbound with ME, Emily Collingridge has put her heart and soul into this book, which should prove an invaluable resource for other people in a similar position" Simon Lawrence, 25% ME Group
Written in consultation with over thirty individuals with ME, carers and professionals, it has been written to help improve the lives of all individuals with severe ME, whatever their age. A4 in size, it provides over 130 jam packed pages covering every conceivable aspect of life with severe ME. It contains specific advice for carers, partners, siblings, friends, doctors, nurses, occupational therapists, physiotherapists, dietitians, speech language therapists, psychologists/counsellors/therapists, social workers and home tutors. Topics covered include symptom and activity management, personal care, tube feeding, mobility, welfare, communication, hospital admission, emotions, coping as a family, friendships and entertainment. It includes numerous medications, types of equipment and sources of help. Sold at cost to enable multiple copy purchase,Severe ME/CFS: A Guide to Living is available at the bargain price of £5.99 (overseas buyers will need to add postage).
For more information and to buy the book, please visit www.severeme.info.
Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia by A. Bested MD, A. Logan ND, Russell Howe (disability lawyer)
Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia is designed to educate patients suffering from CFS/FM about their illnesses and to teach them coping skills that will improve their quality of life.
Some of the issues covered are:
Understanding the symptoms and how diagnoses are made
Causes of CFS/FM and common psychological consequences, including anxiety and depression
The role of stress and how to manage it
The connection between the mind and the body in coping with CFS/FM
The potential of medications, nutrition, and lifestyle changes
The role of complementary medications and dietary supplements in pain management
The value and limitations of alternative and complementary therapies such as acupuncture, massage, homeopathy, and aromatherapy
Legal issues about how to deal with medical and legal problems that may arise if insurance benefits have been stopped
My Imaginary Illness by Chloe G. Atkins
This excellent book succinctly captures the prejudices, ignorance and flaws of the medical system. It illustrates how patients are stuffed into doctors' narrow paradigms created by preconceived notions of their life experience and how patients get stuck within the systems these paradigms create. It shows how patients' truths are overlooked and their experience negated so that the higher god of the medical establishment can be sufficiently pandered to.
We need to get every physician and allied health care staff in Canada and beyond a copy of this book. I see how doctors fall into their traps and into hospital and ministry politics, but it is wrong and things need to change.
One Last Goodbye by Kay Gilderdale, mother of Lynn Gilderdale
Watching her child die is the hardest thing a mother can ever do. But for Kay Gilderdale, saying a final goodbye to her only daughter Lynn was exceptionally painful: she'd played a part in her death. Lynn was just 14 when she was struck down by the crippling disease ME, leaving her paralyzed and in constant agony. Over the next 17 years, she became desperate to escape her miserable existence, even begging her mum to help her die. The highly controversial trial that followed her death opened a fierce public debate on assisted suicide.
Besides raising the suicide/assisted suicide issue, this book is an important document as it shows in great detail just how difficult life with very severe ME/CFS can be. It demonstrates severe medical prejudices which likely lead to Lynn's DNR order and wish to never go to the hospital again (even though she knew this choice would lead to her death, as every winter she needed IV antibiotics administered by the hospital to survive). Let this story be the voice of all those with ME/CFS who are similarly ill, yet unable to speak loud enough to be heard.
How to Be Sick by Toni Bernhard, person with ME/CFS & practicing Buddhist
Osler's Web: Inside the Labyrinth of the chronic Fatigue Syndrome Epidemic by Hilary Johnson, journalist
By bringing chronic fatigue syndrome (CFS) out of the shadows and squarely onto the nation's health agenda, Johnson's groundbreaking, compelling report does for it what Randy Shilts's And the Band Played On did for the AIDS epidemic. Once derisively dismissed as "yuppie flu," CFS was recognized as a legitimate, cohesive disease entity by the Centers for Disease Control only in 1990 (and somewhat grudgingly, at that), six years after the first mass outbreaks, including that of Incline Village, Nevada. The author takes the view that CFS is an infectious immune disorder, affecting millions worldwide and that the exact pathogen is unknown. Freelance journalist Johnson (herself a person with ME/CFS in the mid-1980s) interviewed hundreds of patients, scientists, doctors and government officials. With quiet and precise fury, she reflects a devastating picture of the U.S. government research establishment's decade-long (and continuing) strategy of ignorance, avoidance and denial. Her epic-length report draws chilling parallels between the politics of ME/CFS and AIDS: desperate CFS patients organize support groups, underground clinics, activist coalitions; trials of Ampligen, a promising drug, halted by the FDA; patients losing medical insurance simply for being diagnosed with CFS. Though some of the biological facts of ME/CFS may be presented as rudimentary, incorrect, or have subsequently been proven overly-simplistic, this book is a must read to gain perspective on the politics of the ME/CFS.