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Advances In ME/CFS Research and Clinical Care
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.
Chronic Fatigue Syndrome
Sandy Shaw presents a collection of resources on chronic fatigue syndrome (CFS). The resources include definitions, abstracts, and links to support groups, archives, publications, government agencies, universities, and more.
Lighting Up a Hidden World
The onset can be fast and shocking or slow and insidious. It can happen to anyone at any age. A flu, a vaccination, or an infection can be the innocent beginnings to the potentially life-long and disabling illness called myalgic encephalomyelitis (ME), which is more commonly known as chronic fatigue syndrome (CFS) or ME/CFS in North America. In the mid 1980s, the U.S. Centers for Disease Control (CDC) was called in by concerned doctors who were witnessing an influx of patients with a mysterious illness. Eventually the CDC labeled the condition "chronic fatigue syndrome" which turned out to be very misleading. Decades later, in 2016, health agencies are finally beginning to agree with interna...
ME/CFS - the Severely and Very Severely Affected
Manuscripts in this monograph are sorted into five categories: 1. Case Reports: a description of living as a bedridden patient; structured interviews with severely affected ME/CFS patients; how past events contribute to severe ME/CFS; a comparison of moderately ill, severely ill, and very severely ill; case reports of ME/CFS in children. 2. A healthcare provider's view of managing ME/CFS patients. 3. Characterization of the Severely and Very Severely Affected: (1) the most troubling symptoms; (2) disease severity diminishes capacity for exercise, (3) operationalized definitions of the severely ill and very severely ill; (4) the usefulness of a modified Korean Chalder Fatigue Scale Questionna...
Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia
Over 250 medications that can be used to treat CFS/ME, fibromyalgia and related conditions.
Parallel Universe
Chronic Fatigue and Fibromyalgia in adolescence are insidious diseases, they steal hope perspective and time sadly the medical profession has a huge divergence of opinion on the illness the causes and the cure there just seems to be no definitive answers. The despair that this causes is deep and searing. This book is about one woman’s fight to restore her daughter to health when diagnosed with these diseases. It charts the many professionals that the family saw to try to find a cure for their daughter. Many of the health professionals dismissed the illness believing it to be a disease of malingerers. This lack of understanding of this illness and its origins is one of the defining reasons ...
The Long Haul
How survivors of the Covid-19 pandemic battling long-term disabling conditions are fighting for recognition and research—and helping to transform healthcare for many overlooked diseases. To the world’s public health authorities, Covid-19 would be either a deadly disease for some or a simple respiratory illness for most, its symptoms clearing up in just a matter of weeks. But then tens of millions around the world got sick and stayed sick. With scientists and doctors caught off guard, these Long Covid patients often found solace only with one another, organizing support groups across oceans and continents while ill in bed. In The Long Haul, CNN journalist Ryan Prior weaves his own life, t...
An Evocative Autoethnography of Living Alongside Myalgic Encephalomyelitis (ME)
This ground-breaking book explores and explains the day-to-day realities of living long-term with Myalgic Encephalomyelitis (ME). ME is an acquired complex disorder characterised by a variety of symptoms affecting multiple systems of the body. Marked fatigue and weakness, sickness, cognitive dysfunction and symptom flare-up can follow any physical or cognitive exertion. It is estimated that there are 17-24 million sufferers worldwide. The author has lived with moderately severe ME for the last 18 years. Utilising autoethnography as a methodology and drawing on multidisciplinary social science theory, the book tells the story of the author’s own lived experiences of the illness, and how she...
