Rainbow at shoreline

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

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 ME/CFS 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 ME/CFS 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 ME/CFS. While telling his own story, he manages to successfully integrate the history of ME/CFS 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 ME/CFS, 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 ME/CFS 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.


Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.