Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Author: Institute of Medicine

Publisher: National Academies Press

Published: 2015-03-16

Total Pages: 251

ISBN-13: 0309316928

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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.


Wish It Wasn't M.E.

Wish It Wasn't M.E.

Author: Michelle Flatt

Publisher: Xlibris Corporation

Published: 2013-05-28

Total Pages: 140

ISBN-13: 1483636976

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I hope that if you have Myalgic Encephalomyelitis (ME) (or know someone who has) you will find this book useful. M.E. can affect different people in different ways. Some people are able to carry on with a normal life as long as they pace themselves, others are housebound or even bedridden. This book is about my story, how I developed M.E. and how I have tried to search for an answer and treatment for the symptoms I experience.


Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Author: Bruce Fernie

Publisher: Routledge

Published: 2018-06-12

Total Pages: 158

ISBN-13: 0429898053

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This book provides a helpful structure and framework for understanding Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and its effects as well as practical exercises to help address some of the symptoms that patients may experience.


M. E. , Myself and I

M. E. , Myself and I

Author: K. C. Finn

Publisher: Createspace Independent Pub

Published: 2014-07-04

Total Pages: 168

ISBN-13: 9781500403782

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What this book IS NOT: This is not a book about how to 'cure' M.E.This is not a volume of factual medical information on the conditionThis is not a magical success story from chronic illness to perfect healthWhat this book IS:This is the honest account of a young woman who has suffered with M.E. / C.F.S. for almost half her life. This is what it's really like to live with a long term illness that casts a shadow over every minute of your day.Novelist K.C. Finn turns her hand to non-fiction in this account of her life as an M.E. sufferer, covering thirty topics from diagnosis and medication to sleep, relationships, pain and depression. It offers a unique and extremely personal insight into the struggles and experiences she has encountered in the last twelve years. This book is an opportunity for non-sufferers to experience exactly how it feels to live with this crippling condition and to show fellow M.E. patients that they are not alone. “This book opens the door to my thoughts and feelings. It's not always pretty and it's not always pleasant, but it is honest, and it comes from a place of hope.” – K.C. Finn


Living With M.E.

Living With M.E.

Author: Charles Shepherd

Publisher: Random House

Published: 2008-12-05

Total Pages: 514

ISBN-13: 1409020959

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It is estimated that there are over 100,000 people suffering from M.E. in Britain today. Although not a new disease, M.E. (also known as 'yuppie flu') is at last being recognised and taken seriously. M.E. is short for MYALGIC ENCEPHALOMYSELITIS, a term which relates to the parts of the body affected: MYALGIC, the muscles; ENCEPHALO, the brain; and MYSELITIS, the nerves. Until recently, many people suffering from M.E. had great difficulty in finding a diagnosis and a way of dealing effectively with their chronic fatigue. This comprehensive guide provides much-needed information about the disease. It describes the symptoms of M.E., what triggers it and who can get it and also discusses additional problems such as sleep disorders, depression, pain in the joints and difficulties with the eyes, ears and balance. A well-researched, comprehensive guide, LIVING WITH M.E. is THE book to buy for any M.E. sufferer who wants information not speculation.


Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Author: Roberto Patarca Montero

Publisher: CRC Press

Published: 2001-01-03

Total Pages: 220

ISBN-13: 9780789008749

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How thorough is your understanding of ME/CFS? Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Journeys with the Dragon examines the firsthand experiences of four young women stricken with this stigmatized chronic illness and offers advice and support for the victims, as well as for their family and friends. The book focuses on the ways they cope with a stigmatizing chronic illness during adolescence and the impact it has on their lives. It offers a personal “guide to survival” that will appeal to adolescent patients and parents, and it provides a window into the psychosocial implications of illness that is well-suited to professionals. Providing a description of symptoms that vary in intensity every day, such as fatigue, migraine headaches, muscle pain and/or weakness, cognitive dysfunction, and more, this valuable book also gives suggestions on how to cope with this disease as it looks at these patients’experiences from a psychological perspective. You will find reassurance, support, and an increase in knowledge as you become familiar with ME/CFS, and you will learn how real people are living with and managing this illness with strength and courage. Comprehensive and compelling, Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will appeal both to experts and novices. A chronology of the participants’experiences in their own words is followed by scientific discussion of an inductively derived theory that applies to that patient. Some of the areas that Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome focuses on are: the role of stigma for patients and their families family interaction chronic illness management peer concerns development of the self interaction with broader institutions such as medical, educational, and insurance/government disability programs Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome also addresses issues and topics that need to be explored in the future in order to help individuals and families lead easier and more independent lives.


HELP ME! What I Wish Families Knew About ME/CFS

HELP ME! What I Wish Families Knew About ME/CFS

Author: Dr Cherla Meisterman Lisw, PhD

Publisher:

Published: 2020-05-28

Total Pages: 226

ISBN-13: 9781654247492

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HELP ME! What I Wish Families Knew About ME/CFS, subtitled, MYALGIC ENCEPHALOMYELITIS (ME) Also Known As: CHRONIC FATIGUE SYNDROME by Rebecca Susan Culbertson, MSW/LISW. Foreword by Dr. Cherla Meisterman, PhD, LISW. HELP ME! This book pleads for families, partners and friends to educate themselves about this horrific illness that literally rips families apart. Divorce rates are over 75% for couples when a spouse has been diagnosed with ME/CFS. A frightening statistic. This book is written for those who have been diagnosed with Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Fibromyalgia, or any other chronic debilitating disease. It is written for those who are in limbo, suffering still without a diagnosis, and this book is also written to educate families and friends of persons with ME/CFS. This book will help you learn how to maintain your dignity while dealing with doctors who doubt your illness. You will discover self reporting charts later in this book for use with family, physicians, employers and others. It is difficult to maintain your self confidence if persons in your life do not understand the current state of your functioning. It is of vital importance to educate those around you, when you are able. This book can be a tool to that end. The book provides information about when and how to apply for disability insurance you certainly deserve. Are you watching your former financial security implode right before your eyes? Learn how to deal with creditors and how to manage financial debt with less stress. The book will teach you techniques that the author has used in her Family Therapy Practice with patients in living lives of positivity, seeking happiness, and practicing humility. Learn methods of living with ME/CFS while still setting life goals to realistically achieve your dreams. And importantly, the book is written from the viewpoint of having been diagnosed with ME/CFS herself, and then filtered through her professional perspective as a psychotherapist. Michael McVicker a Prevention Specialist and Family Therapist, concludes this book, (in Chapter 26) with THE IMPORTANCE OF HAVING A PERSONAL SUPPORT SYSTEM. Michael uses true life storytelling mixed with humor to inform families from his section titled, A VIEW FROM THE SIDELINE. He tells his story from watching (at times helplessly) and supporting his spouse, the author of this book, through the misery this illness brings. He also writes through the lens of being a stepfather to their two teenage sons, and watching their ascent into adulthood. He deals with topics not currently addressed in other ME/CFS literature currently available, including sex and intimacy. Divorce is seldom the most ecological solution to this real life crisis. Divorce only exacerbates the familial problems. Dr. Cherla Meisterman, PhD, LISW, (Dr. Cherla's Musings, Chapter 18) offers methods of treating patients with ME/CFS, and attempts to invite other professional therapists to join her in treating this very needy population. With divorce rates so high, questions arise about why more ME/CFS patients do not seek psychotherapy treatment. To me, as a ME/CFS sufferer, it is very clear. Treatment is financially prohibitive, and more importantly persons with this diagnosis have been told verbally and nonverbally, over and over "it's all in your head". So why would any ME/CFS patient want to go to psychotherapy? ("Why go and prove the wrong headed physicians correct - "it's all in my head"?) If the patient is supported by his or her partner, and if the patient feels believed that their illness is real, then psychotherapy may become an option that could potentially save relationships and lower divorce rates. Dr. Cherla addresses how to go about selecting the best therapist for you, and things to consider prior to making that phone call. There are worksheets included for your written expression, and for use with physicians, family members, and others.


The Doctor's Guide To Chronic Fatigue Syndrome

The Doctor's Guide To Chronic Fatigue Syndrome

Author: David S. Bell

Publisher: Da Capo Press, Incorporated

Published: 1994-01-20

Total Pages: 314

ISBN-13:

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Written by the nation's most recognized CFIDS' authority, this book is the definitive, up-to-date guide to the history, symptoms, effects, theories, treatment, continuing research, and recent advances on CFIDS. Now anyone touched by this devastating illness can have the solid information they need to understand, treat, and live with CFIDS.


Pediatric Chronic Fatigue Syndrome

Pediatric Chronic Fatigue Syndrome

Author: Kenny De Meirleir

Publisher: CRC Press

Published: 2007-02-07

Total Pages: 146

ISBN-13: 9780789035325

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Help young CFS sufferers cope with this debilitating illness Chronic Fatigue Syndrome (CFS) is a debilitating illness that can have devastating effects for those afflicted, especially children and adolescents. Pediatric Chronic Fatigue Syndrome discusses this growing problem and its many facets in depth, including the mounting prevalence of incidents in the population and detailed explanations of diagnostic criteria. Case studies are provided to illustrate the issues those afflicted with CFS face, such as increasing isolation, decreasing school attendance, the length of time it typically takes to get diagnosed, and the impact on leisure activities. Current criteria for CFS were designed for use in adults, with few studies done on assessing how appropriate these criteria are for children and adolescents. Pediatric Chronic Fatigue Syndrome provides the criteria for first-time diagnosis of pediatric CFS and includes practical recommendations developed by the International Association of Chronic Fatigue Syndrome Pediatric Case Definition Working Group. This book closely examines the potential impact that Chronic Fatigue Syndrome has on child and adolescent functioning, psychological factors, social factors, and the suffering endured from symptoms. Guidelines are provided on ways ME-CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) can be addressed in primary practice. Topics in Pediatric Chronic Fatigue Syndrome include: ME/CFS CACFS (Chronic Fatigues Syndrome in Children and Adolescents) the common problem of Munchausen-by-proxy research on the psychosocial, family, and physical functioning comparing children and adolescents with CFS and those without CFS using theory in clinical practice guidelines on how ME/CFS can be addressed in primary practice overview of CFS aspects for healthcare professionals who may be called on to diagnose or treat the illness and more Pediatric Chronic Fatigue Syndrome is timely, important information for health professionals, researchers, counselors, caregivers, parents of children and adolescents with CFS, and patients with CFS.