Trött är fel ord: Om att leva med den osynliga sjukdomen ME/CFS

Trött är fel ord: Om att leva med den osynliga sjukdomen ME/CFS

Editor	Britt-Marie Thurén
Country	Sweden
Language	Swedish
Genre	Medical
Publisher	Recito Förlag
Publication date	2011
Media type	print
Pages	125
ISBN	978-9175170817

Trött är fel ord: Om att leva med den osynliga sjukdomen ME/CFS (Tired is the wrong word: Living with the invisible disease ME/CFS) is a Swedish book edited by Britt-Marie Thurén.

Publisher's synopsis

(This synopsis was provided by the publisher for promotional purposes. For book reviews, please see Links section below.)

Suppose there is a disease that is recognized by WHO and about which research is being done in countries with major research resources. Suppose new treatments for this disease are being tried out. Suppose Swedish citizens are being denied care for it. Suppose further that most of the time they do not even receive information about it from their doctors. Let us also suppose that they sometimes are denied sickness benefits from Social Security, when the disease makes it impossible for them to work. Is this not an outrageous way to treat people?

Well, there really is such a disease. Its official name is ME/CFS (abbreviation for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), but in Swedish media it is usually called “kroniskt trötthetssyndrom”, which literally means: Chronic Tiredness Syndrome, using a word that tends to trivialize the deep fatigue it actually entails.

In order to create debate and describe how the disease works and how the people who suffer from it handle their situation, we have put together a book with personal narratives from nineteen patients. The book also includes two chapters written by two of Sweden’s few specialists on the illness (Birgitta Evengård and Olof Zachrisson), an overview of ongoing research and a summary of a survey.

Links

• Trött är fel ord - Amazon (UK)
• Trött är fel ord - Bokus

Learn more

• Press Release: New Book "Trött är fel ord – Om att leva med den osynliga sjukdomen ME/CFS" - Swedish
• Excerpts and list of contents - Swedish
• Excerpts and list of contents - English (pdf)

See also

• Sweden

References

‎

invisible illness A chronic condition or illness, such as ME/CFS, which may not be apparent to others. Sufferers may look healthy, yet be in poor health. Symptoms of the illness may not be visible and can be misunderstood or go unnoticed by others. Also, patients may wind up secluded or homebound due to the illness and become "invisible". (Learn more: me-pedia.org)

World Health Organization (WHO) - "A specialized agency of the United Nations that is concerned with public health. It was established on 7 April 1948, and is headquartered in Geneva, Switzerland. The WHO is a member of the United Nations Development Group. Its predecessor, the Health Organization, was an agency of the League of Nations." The International Statistical Classification of Diseases and Related Health Problems (ICD) is maintained by WHO.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.