Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome


Book Description

Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that affect millions of people in the United States and around the world. ME/CFS can cause significant impairment and disability. Despite substantial efforts by researchers to better understand ME/CFS, there is no known cause or effective treatment. Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some health care providers have been skeptical about the serious physiological - rather than psychological - nature of the illness. Once diagnosed, patients often complain of receiving hostility from their health care provider as well as being subjected to treatment strategies that exacerbate their symptoms. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome proposes new diagnostic clinical criteria for ME/CFS and a new term for the illness - systemic exertion intolerance disease(SEID). According to this report, the term myalgic encephalomyelitis does not accurately describe this illness, and the term chronic fatigue syndrome can result in trivialization and stigmatization for patients afflicted with this illness. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome stresses that SEID is a medical - not a psychiatric or psychological - illness. This report lists the major symptoms of SEID and recommends a diagnostic process.One of the report's most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis. The new criteria will allow a large percentage of undiagnosed patients to receive an accurate diagnosis and appropriate care. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will be a valuable resource to promote the prompt diagnosis of patients with this complex, multisystem, and often devastating disorder; enhance public understanding; and provide a firm foundation for future improvements in diagnosis and treatment.







Explaining Unexplained Illnesses


Book Description

Discover the answer to the mysteries of these debilitating illnesses Explaining “Unexplained Illnesses” provides long-sought explanations for the properties of chronic fatigue syndrome (CFS), multiple chemical sensitivity (MCS), fibromyalgia, and posttraumatic stress disorder. This groundbreaking book examines common symptoms and signs; short-term stressors such as infection, chemical exposure, physical trauma, and severe psychological stress; why people are often diagnosed as having more than one of these illnesses, and approaches for treating the cause of each disease, rather than the symptoms. The book presents a detailed and well-supported mechanism (the NO/ONOO- cycle) that provides consistent explanations for many of the puzzling elements of these diseases. At least a dozen scientists have proposed that chronic fatigue syndrome, multiple chemical sensitivity, and fibromyalgia must share a common mechanism; others have suggested posttraumatic stress disorder may belong to this group as well. This unique book provides explanations for their previously unexplained properties with more than 1,500 references to scientific literature, creating a whole new approach to therapy and treatment of these illnesses. Explaining "Unexplained Illnesses" provides answers to these questions: how do short-term stressors initiate chronic illness? how does the biochemistry of the NO/ONOO- cycle produce chronic illness? how can the diverse symptoms and signs of these illnesses be generated as a consequence of their common biochemistry? why is there so much variation in symptoms from one sufferer to another? what are the principles underlying the NO/ONOO- cycle mechanism? how does the NO/ONOO- cycle provide explanations for a dozen previously unexplained properties of these illnesses? how might 14 additional illnesses/diseases also be caused by the NO/ONOO- cycle etiology? and many more Explaining “Unexplained Illnesses” is a must-read for physicians and scientists, and for anyone who suffers from-or knows someone who suffers from—these previously puzzling illnesses.




Bite Me


Book Description

Ally was at a breaking point when she woke up in a psych ward at the age of eighteen. She couldn't put a sentence together, let alone take a shower, eat a meal, or pick up a phone. What had gone wrong? In recent years, she had produced a feature film, a popular reality show for a major network, and had acted in an off-Broadway play. But now, Ally was pushed to a psychotic break after struggling since she was seven years old with physical symptoms that no doctor could explain; everything from joint pain, to night sweats, memory loss, nausea, and brain fog. A doctor in the psych ward was finally able to give her the answers her and her family had desperately been searching for, and the diagnosis that all the previous doctors had missed. She learned that she had Lyme disease-and finally had a breakthrough. What she didn't know was that this diagnosis would lead her down some of the most excruciating years of her life before beginning her journey to recovery from eleven years of misdiagnosis and physical pain. She would need to find her courage to heal physically, mentally, and emotionally, and become the survivor she is today. Set against the backdrop of the fast-paced fashion and entertainment industries, Bite Me shares the heartbreaking and hilarious stories that moved Ally forward on her journey from sickness to health. Its themes will be familiar to more than 300,000 Americans diagnosed with Lyme disease each year, many of whom, like Ally, wondered for years what was wrong with them. Bite Me offers readers hope and ideas for how one can transition from victim to survivor, and shares the spiritual principles and actions that have contributed to her wholeness as a human, mother, and international spokesperson against Lyme disease.




Believe Me


Book Description

From the star of The Real Housewives of Beverly Hills comes an emotional and eye opening behind-the-scenes look at her descent into uncovering the mystery of chronic Lyme disease. In early 2011, Yolanda was struck by mysterious symptoms including brain fog, severe exhaustion, migraines and more. Over the months and years that followed, she went from being an outspoken, multi-tasking, hands-on mother of three, reality TV star, and social butterfly, to a woman who spent most of her time in bed. Yolanda was turned inside out by some of the country’s top hospitals and doctors, but due to the lack of definitive diagnostic testing, she landed in a dark maze of conflicting medical opinions, where many were quick to treat her symptoms but could never provide clear answers to their possible causes. In this moving, behind the scenes memoir, Yolanda Hadid opens up in a way she has never been able to in the media before. Suffering from late stage Lyme, a disease that is an undeniable epidemic and more debilitating than anyone realizes, Yolanda had to fight with everything she had to hold onto her life. While her struggle was lived publicly, it impacted her privately in every aspect of her existence, affecting her family, friends and professional prospects. Her perfect marriage became strained and led to divorce. It was the strong bond with her children, Gigi, Bella and Anwar, that provided her greatest motivation to fight through the darkest days of her life. Hers is an emotional narrative and all-important read for anyone unseated by an unexpected catastrophe. With candor, authenticity and an unwavering inner strength, Yolanda reveals intimate details of her journey crisscrossing the world to find answers for herself and two of her children who suffer from Lyme and shares her tireless research into eastern and western medicine. Believe Me is an inspiring lesson in the importance of having courage and hope, even in those moments when you think you can’t go on.




Can You Help Me?


Book Description

Can You Help Me?: Living in the Turbulent World of Huntington Disease shares the surprising, insightful, challenging, and even encouraging stories of patients and their families who live with Huntington Disease. Having seen patients for more than 40 years, Dr Thomas Bird, a pioneer neurogeneticist, adds a human touch to this genetic brain disease that devastates persons during mid-life when they can least afford it. With a brief history of Huntington Disease and the occasional scientific detail, the true heart of the book is the human experience of the disorder: � The man who cannot stay out of prison because he is addicted to being a burglar. � Another man shoots and kills his roommate while watching television and cannot explain why he did it. � The woman with Huntington Disease copes with her depression by using Texas line dancing. � A twelve year old girl with juvenile Huntington Disease who can barely walk and talk, but her classmates rally around with touching and heartfelt support. � And the 72 year old man with late onset Huntington Disease and severe depression is made worse by ECT, but improved (for a while) with Transcranial Magnetic Stimulation. These are just some of the compelling stories of people of all ages and in all walks of life who feel trapped by a progressive degenerative brain disease from which there is no escape.




A Disease Called Fatigue


Book Description




Inherited Metabolic Disease in Adults


Book Description

As clinical management of inherited metabolic diseases (IMDs) has improved, more patients affected by these conditions are surviving into adulthood. This trend, coupled with the widespread recognition that IMDs can present differently and for the first time during adulthood, makes the need for a working knowledge of these diseases more important than ever. Inherited Metabolic Disease in Adults offers an authoritative clinical guide to the adult manifestations of these challenging and myriad conditions. These include both the classic pediatric-onset conditions and a number of new diseases that can manifest at any age. It is the first book to give a clear and concise overview of how this group of conditions affects adult patients, a that topic will become a growing imperative for physicians across primary and specialized care.




The Deep Places


Book Description

NEW YORK TIMES EDITORS’ CHOICE • In this vulnerable, insightful memoir, the New York Times columnist tells the story of his five-year struggle with a disease that officially doesn’t exist, exploring the limits of modern medicine, the stories that we unexpectedly fall into, and the secrets that only suffering reveals. “A powerful memoir about our fragile hopes in the face of chronic illness.”—Kate Bowler, bestselling author of Everything Happens for a Reason In the summer of 2015, Ross Douthat was moving his family, with two young daughters and a pregnant wife, from Washington, D.C., to a sprawling farmhouse in a picturesque Connecticut town when he acquired a mysterious and devastating sickness. It left him sleepless, crippled, wracked with pain--a shell of himself. After months of seeing doctors and descending deeper into a physical inferno, he discovered that he had a disease which according to CDC definitions does not actually exist: the chronic form of Lyme disease, a hotly contested condition that devastates the lives of tens of thousands of people but has no official recognition--and no medically approved cure. From a rural dream house that now felt like a prison, Douthat's search for help takes him off the map of official medicine, into territory where cranks and conspiracies abound and patients are forced to take control of their own treatment and experiment on themselves. Slowly, against his instincts and assumptions, he realizes that many of the cranks and weirdos are right, that many supposed "hypochondriacs" are victims of an indifferent medical establishment, and that all kinds of unexpected experiences and revelations lurk beneath the surface of normal existence, in the places underneath. The Deep Places is a story about what happens when you are terribly sick and realize that even the doctors who are willing to treat you can only do so much. Along the way, Douthat describes his struggle back toward health with wit and candor, portraying sickness as the most terrible of gifts. It teaches you to appreciate the grace of ordinary life by taking that life away from you. It reveals the deep strangeness of the world, the possibility that the reasonable people might be wrong, and the necessity of figuring out things for yourself. And it proves, day by dreadful day, that you are stronger than you ever imagined, and that even in the depths there is always hope.




The Lady's Handbook for Her Mysterious Illness


Book Description

The darkly funny memoir of Sarah Ramey’s years-long battle with a mysterious illness that doctors thought was all in her head—but wasn’t. In her harrowing, darkly funny, and unforgettable memoir, Sarah Ramey recounts the decade-long saga of how a seemingly minor illness in her senior year of college turned into a prolonged and elusive condition that destroyed her health but that doctors couldn't diagnose or treat. Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological. The Lady's Handbook for Her Mysterious Illness is a memoir with a mission: to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions—autoimmune illnesses, fibromyalgia and chronic fatigue syndrome, chronic Lyme disease, chronic pain, and many more. Ramey's pursuit of a diagnosis and cure for her own mysterious illness becomes a page-turning medical mystery that reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connections to the state of our microbiomes. Her book will open eyes, change lives, and, ultimately, change medicine. The Lady's Handbook for Her Mysterious Illness is a revelation and an inspiration for millions of women whose legitimate health complaints are ignored.