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Echo Flu

"We’re Not in Kansas Anymore:
Chronic Fatigue Syndrome and the Politics of Disease”
by Rik Carlson.

A BOOK REVIEW by Cort Johnson, Phoenix CFS
November, 2007

A self-made businessman who’d seen both the top and the bottom of the business cycle Rik Carlson looked like he’d really made it when on New Years day of 2005 he came down with a case of the flu. He got over it – it came back, he got over it – it came back, and then not long after a close friend unexpectedly died it hit him like a sledgehammer and he didn’t get over it.

I just swallowed this book up. It wasn’t hard to do. It’s a great story and Rik is a natural story teller.
With a foot in the sixties and another in the business world he is an intriguing blend of romantic and realist. He doesn’t beat around the bush, he doesn’t try to pretty things up, he’s blunt and he’s sincere.

More than anything else this is a personal account of ME/CFS. The tension he felt as he waited for his disability appointment was palpable. His almost blow by blow account of his monumental and appalling battles with his insurance company should be required reading not only for ME/CFS patients but for everyone faced with a controversial disease. Throughout the book Rik guides us through his difficulties and his successes with an honesty that’s engaging and compelling.

The few chapters on the history of ME/CFS didn’t grab me – they’ve been told before - and they aren't his forte. Rik’s gift is in his personal essays and those pop with an energy, indignation and dark humor which makes his frequent softer asides such as his enchantment with his cats and his new found love of nature all the more appealing.

Rik was not a writer before he got ME/CFS but he digs deep into his experience and his prose shines with a forceful rhythm of its own. ‘We’re Not in Kansas Anymore” is a compelling account of one mans struggle with ME/CFS.

“We’re Not in Kansas Anymore” can be bought directly (and signed) from Rik, from bookstores in Vermont or in a very affordable .pdf format from the Vermont CFIDS Association Website.

The following is a review by Gail Kansky who is the Editor of The National Forum and is President of the National CFIDS Foundation, Inc. in Needham, Massachusetts.
It appears in The National Forum,Vol. 6, No. 3, Winter 2002-2003.

It is followed by a review by Pat Fero which appeared in Volume 16, No. 2 Summer 2003, The Lifeline, Quarterly Newsletter of the Wisconsin Chronic Fatigue Syndrome Association, Inc.

     Most books we review in the Forum are sent to us by the publisher in hopes for a good review. Sometimes they're severely disappointed when the reviewer trounces on their free review copy harshly. This time I requested a review copy. The author was the head of a support group that went on valiantly for a decade before recently disbanding. I had spoken to him, briefly, a few times over the years. I was curious and prepared to be disappointed. I wasn't. Yuppie Flu is a great book about the author, his life pre-CFIDS, and the life he now lives. It's an honest, down to earth book that pulls no punches. Rik isn't a journalist, but he writes from his heart. He pulls no punches, but his book is one you won't soon forget.

     From Mouseketeers to Vietnam and beyond, Rik lived his life with gusto and relished success. The first chapters introduce you to Woodstock and his baby-boomer history. Then he got the flu, but it was the yuppie flu and recovery wasn't to be. "In England and Japan it's called the Myalgic Encephalomyelitis, or M.E. There are dozens of names. My favorite is Yuppie Flu. Some bristle at that name because it's demeaning. I like it because it's not nearly as offensive as the name chosen (chronic fatigue syndrome) and because it sports cultural charm."

     Rik had a classic and devastating abrupt onset of ME yet he writes with a quirky sense of humor that actually makes this tale of suffering entertaining and highly educational. It took him six years to write the book and it was truly self published as Rik put it together in the basement of his home. Yet I don't envision any patient that would be disappointed with his riveting style of writing and his brash honesty. I certainly don't agree with Rik on all fronts. For instance, he truly believes, as I once did, that the CFIDS Association (CAA) is a beacon of hope. I found out differently and the rest has been history, but I can understand why he would feel this way. There is so much that a patient will understand and so much a non-patient would learn, that it's a shame this book can't be required reading for a host of people. When Michelle Akers becomes the CAA's poster child, he writes, "This isn't a vacation. Long rides in the country and jogging at leisure aren't in any CFIDS profile I know. When you're crawling on your bloody stumps just to get to the bathroom, when you can't carry on a conversation because you're no smarter than your sweat socks, and when you're always about to vomit because a hatchet is buried in your forehead, you're hardly prepared to 'savor life in general.' " Rik is able to write what he couldn't, for years, articulate, and it is a wonderful read that no patient should miss. I felt good when I finished this book because I knew that Rik was one of those who will benefit from our research and one of those who deserves to! He was and remains a fighter that all the abuse ME/CFIDS has to dish hasn't dulled.

     With a Forward by one of Rik's physicians, this is a book that touches upon the political history of ME/CFIDS and how the insurance companies are out to deceive at all costs. It's a book about nature, about love, about life. If you're in the mood for a book that will both entertain and enlighten, and one that you will want to pass on to your friends and relatives, send a check for 19.95 plus 3.00 for priority (first class) mailing to Carlsson Group, PO Box 3162, Burlington, VT 05401-3162, but add an extra dollar for tax if you live in Vermont. Or order online by going to www.rikcarlson.com, but you won't know the significance of those winged monkeys or why Mercedes is a work in progress until you've read the book. It's nothing short of delightful despite the severity of the subject matter!"

Yuppie Flu (original title), by Rik Carlson, Carlsson Group,
PO Box 3162, Burlington, VT 05401-2162 (2001) 125 pgs.

     (Review by Pat Fero) The Association received a flyer about this book and I contacted Rik to acquire a copy for review. I give this book a 10. Rik writes about the details of his journey through chronic fatigue syndrome. He had an "Ozzie and Harriet" family, was a campus activist during the Viet Nam war era, and created a non-traditional, but highly successful business venture. Then... January 1, 1995, he got the flu. Happy New Year.

     Within a short time, Rik was back running a business - working sick, just as many people di while they wait to recover. Rik says that one peaceful Sunday morning. at 11:30 AM, "in a heartbeat, I was unbelievably sick. It came out of nowhere in a wave that slapped me into a chair, took my breath away and knocked me senseless."

     Do you remember the first few years of illness - the stupor, the anger and sadness like a lingering nightmare? I will wake up. I will wake up. Remember the insurance company hassles, the doctor shop and your dismay, outrage or disbelief that anyone could think this illness transformed you into what you use to call a nut case? How about those pills? Rik describes all the firsts. What? Antioxiwhats?

     I liked Yuppie Flu.  Matter of fact, I started to read the book after 10 PM one evening. What was I thinking? I finished up at 1 AM and tried to sleep. Not. So I got up to e-mail Rik a few comments. Uh huh...

     Rik writes well, has a voice for detail, side humor, and is good at conveying truth without sounding pitiful. If you do not want to borrow Yuppie Flu from the lending library, you can call 1-800-296-1445 or go onto the web site at: