Advances In ME/CFS Research and Clinical Care


Book Description

In 2015, the Institute of Medicine (USA) issued a report critical of the research effort and clinical care for ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) formerly known as Chronic Fatigue Syndrome (CFS) and Chronic Fatigue Immune Deficiency Syndrome (CFIDS). While worldwide investigation into the cause and nature of ME/CFS remains disproportionately small, and treatment remains symptomatic and controversial, modest research continues in all aspects of this disease: epidemiology, possible infectious origins and other triggers, possible involvement of genetics, metabolism, and microbiome, influence of co-morbid conditions, and more. Treatment of patients consists of providing symptomatic relief. Guidance in doing so is provided for the clinician. School-age children require not only treatment but, as revealed in a 25-year retrospective study, continued engagement with peers and social activity. This e-book explores the breadth and depth of current ME/CFS research and clinical care. Its impact for other chronic, complex illnesses should not be overlooked.




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.




Biomedical Insights that Inform the Diagnosis of ME/CFS


Book Description

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe chronic health condition that is often misunderstood or ignored by health establishments. The lack of definitive diagnostic markers to separate ME/CFS patients from the healthy population as well as from other chronic disorders is problematic for both health professionals and researchers. A consortium of Australian researchers gathered to systematically understand ME/CFS, ranging from a deep analysis of clinical and pathology data to metabolomic profiles and the investigation of mitochondrial function. From this broad collaboration, a number of compelling insights have arisen that may form the basis of specific serum, blood, and/or urinary biomarkers of ME/CFS. This Special Edition reports on a conference centred on these biomedical discoveries, with other contributions, with a translation focus for predictive markers for ME/CFS diagnosis. By supporting health professionals with developments in diagnostics for this condition, the patients and their families will hopefully benefit from an improved recognition of the biomedical underpinnings of the condition and will be better able to access the care that is urgently required. This Special Edition contains a mix of speaker submissions and other accepted manuscripts that contributed to our objective of advancing biomedical insights to enable the accurate diagnosis of ME/CFS.




Pediatric Chronic Fatigue Syndrome


Book Description

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.







Ending Discrimination Against People with Mental and Substance Use Disorders


Book Description

Estimates indicate that as many as 1 in 4 Americans will experience a mental health problem or will misuse alcohol or drugs in their lifetimes. These disorders are among the most highly stigmatized health conditions in the United States, and they remain barriers to full participation in society in areas as basic as education, housing, and employment. Improving the lives of people with mental health and substance abuse disorders has been a priority in the United States for more than 50 years. The Community Mental Health Act of 1963 is considered a major turning point in America's efforts to improve behavioral healthcare. It ushered in an era of optimism and hope and laid the groundwork for the consumer movement and new models of recovery. The consumer movement gave voice to people with mental and substance use disorders and brought their perspectives and experience into national discussions about mental health. However over the same 50-year period, positive change in American public attitudes and beliefs about mental and substance use disorders has lagged behind these advances. Stigma is a complex social phenomenon based on a relationship between an attribute and a stereotype that assigns undesirable labels, qualities, and behaviors to a person with that attribute. Labeled individuals are then socially devalued, which leads to inequality and discrimination. This report contributes to national efforts to understand and change attitudes, beliefs and behaviors that can lead to stigma and discrimination. Changing stigma in a lasting way will require coordinated efforts, which are based on the best possible evidence, supported at the national level with multiyear funding, and planned and implemented by an effective coalition of representative stakeholders. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change explores stigma and discrimination faced by individuals with mental or substance use disorders and recommends effective strategies for reducing stigma and encouraging people to seek treatment and other supportive services. It offers a set of conclusions and recommendations about successful stigma change strategies and the research needed to inform and evaluate these efforts in the United States.




Chronic Fatigue Syndrome


Book Description

Chronic Fatigue Syndrome (CFS) is a complex, debilitating disorder, yet few current scientific biomedical books are available on the subject. The nonspecific symptoms, lack of diagnostic tests, and uncertainty as to the cause or causes of CFS make the disease that much more baffling. Chronic Fatigue Syndrome: A Biological Approach represents a monu




ME/CFS/PVFS


Book Description




It's All in Your Head


Book Description

A neurologist explores the very real world of psychosomatic illness. Most of us accept the way our heart flutters when we set eyes on the one we secretly admire, or the sweat on our brow as we start the presentation we do not want to give. But few of us are fully aware of how dramatic our body's reactions to emotions can sometimes be. Take Pauline, who first became ill when she was fifteen. What seemed at first to be a urinary infection became joint pain, then food intolerances, then life-threatening appendicitis. And then one day, after a routine operation, Pauline lost all the strength in her legs. Shortly after that her convulsions started. But Pauline's tests are normal; her symptoms seem to have no physical cause whatsoever. Pauline may be an extreme case, but she is by no means alone. As many as a third of men and women visiting their GP have symptoms that are medically unexplained. In most, an emotional root is suspected and yet, when it comes to a diagnosis, this is the very last thing we want to hear, and the last thing doctors want to say. In It's All in Your Head consultant neurologist Dr Suzanne O'Sullivan takes us on a journey through the very real world of psychosomatic illness. She takes us from the extreme -- from paralysis, seizures and blindness -- to more everyday problems such as tiredness and pain. Meeting her patients, she encourages us to look deep inside the human condition. There we find the secrets we are all capable of keeping from ourselves, and our age-old failure to credit the intimate and extraordinary connection between mind and body.




Bad Science


Book Description

Have you ever wondered how one day the media can assert that alcohol is bad for us and the next unashamedly run a story touting the benefits of daily alcohol consumption? Or how a drug that is pulled off the market for causing heart attacks ever got approved in the first place? How can average readers, who aren't medical doctors or Ph.D.s in biochemistry, tell what they should be paying attention to and what's, well, just more bullshit? Ben Goldacre has made a point of exposing quack doctors and nutritionists, bogus credentialing programs, and biased scientific studies. He has also taken the media to task for its willingness to throw facts and proof out the window. But he's not here just to tell you what's wrong. Goldacre is here to teach you how to evaluate placebo effects, double-blind studies, and sample sizes, so that you can recognize bad science when you see it. You're about to feel a whole lot better.