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 (Tired is the wrong word: Living with the invisible disease ME/CFS) is a Swedish book edited by Britt-Marie Thurén.
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.
- 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)