“We Aren’t In Kansas Anymore: Chronic Fatigue Syndrome & the Politics of Disease" by Rik Carlson, founder of the Vermont CFIDS Association, is both an easy read and a very informative book. All CFIDS/ME or FM patients should read it because they will be able to relate to the author, while non-patients may find it difficult to follow mainly because they have no way of understanding and feeling the symptoms Carlson describes so well. At times Carlson uses salty language but it is not offensive.
This book takes the reader on a trip through the CFIDS/ME world from many perspectives. Carlson beautifully captures the framework from the point of view of the patient, initially getting ill and not being able to function, expecting to recover and not being able to recover, through to the political stage and explaining how advocacy plays such a major role in medical care. During this time, he kept careful logs on what he tried, what was working for him, and what was not. Carlson employed anything that would help him—from pills to supplements—and shares that in the book. He also writes how important it was to have tremendous family support along the way.
In this book he is able to put into words what so many patients feel but can’t express: the day to day struggle of surviving, controlling pain, cognitive impairments, fights with the medical system, fights with the insurance system, the disability system, and finally, the hope of getting better.
When Carlson finally received a diagnosis, he set out on his own to learn all he could about the illness and what treatments were available. Using the narrow window of cognitive time he had on some days, he used his computer to do research about CFIDS/ME. While telling his own story, he manages to successfully integrate the history of CFIDS/ME in the USA from the 1980’s to current times, the historical stance the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) took on CFIDS/ME, as well as the overall political system of inertia.
The first two chapters give us autobiographical information about Carlson. He then weaves together his background as a business man, his ride into CFIDS/ME territory, the rollercoaster of symptoms he faced, the problems within the medical community as to whether it is real or not, and his understanding of the big picture. Carlson, to date, is still ill but has learned to live within his envelope of energy.
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