Essays, History and Fiction

Love and Fatigue in America by Roger King (2011)

Roger King’s fictionalized account of his long road to acceptance and understanding after a acute attack at a gym (of all places)  lays him low has received universally positive reviews. A Brit with a sly sense of humor, as King and his dog road-trip it across the US, King comes to grips with both a new culture and his changed circumstances with style and grace.

‘ENCOUNTERS WITH THE INVISIBLE’ Unseen Illness, Controversy, and Chronic Fatigue Syndrome by Dorothy Wall

Stricken with CFS as a young adult in 1980, Dorothy Wall’s has been through it all; the uncertainty of dealing with an unknown disease, the attempts to hold it all together, the relationship problems this disease causes, the isolation it engenders, the uncomprehending friends, the clueless doctors, the small steps forward, the occasional big steps back, the bit by bit resumption of her career.

These are difficult subjects but this is not a depressing book. Nor is it a get well story or heroic epic, instead it is a look at how an articulate and intelligent woman has confronted and still confronts the vicissitudes of having a difficult chronic disease. As we watch her struggle with the aftermath of a terrible relapse she suffered in the midst of a business trip in 1995 she takes us through a range of topics; the disease’s history, it’s strange name, its effects on relationships, its many manifestations, it’s central nervous and immune system complications, the ups and downs of the advocacy movement, the clash between patient and doctor, advocate and agency, etc.

The chapter on neurasthenia – the name for CFS a hundred years ago – was fascinating. CFS has primarily been a women’s disease throughout history and women have borne both the brunt of its effects both physically and psychologically. It was heartbreaking to read the eloquent stories of women’s struggle with both the prejudices of their time and their disease. This disease, largely hidden throughout history has caused a countless amount of suffering over time.

Another intriguing aspect Dorothy brings out are the disorders many manifestations of invisibility; how the name has masked the publics understanding of it; how the normal test results mask its severity, how the isolation and silence this disease brings thwarts its public articulation, how it’s mysteries have thwarted it’s effective treatment.

As one follows Dorothy one celebrates her triumphs and fears for her losses – at one point I was so worried about her I skipped to the end to find out how it all turned out. CFS patients will find their own concerns echoed and their problems illuminated and at all times they will enjoy her rich, poetic prose. Dorothy was a creative writer and editor before she came down with CFS (and still is) and it shows; CFS is not at an easy disease to describe but her ability to tease out its manifestations – to make it come alive for the reader – is stunning.

This is a book that should resonate throughout the ME/CFS community for years to come.

No Wizard – No Oz We’re Not in Kansas Anymore: Chronic Fatigue Syndrome and the Politics of Disease by Rik Carlson

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 direct (and signed) from Rik, from bookstores in Vermont or in a very affordable Pdf. format from the Vermont CFIDS Association Website. 

Chronic Fatigue Syndrome A Novel by Caroline Anderson

And it all began just one year from today”…. So begins Edward Abbey’s classic subversive ecoclassis “The Monkey Wrench Gang” focusing on a gallant but quirky group of environmentalists that band together to stop the ravages of big Coal in the Southwest.

Caroline Anderson’s gripping portrayal of a small communities fight for health (and justice) in the face of a mysterious disorder in “A Chronic Fatigue Syndrome Novel” is not far removed from Abbey’s creation. When the local country doc, Alistair, goes searching for answers she stumbles into a shadowy and even, at times, dangerous world of tainted government agencies and big corporations doing what they need to do to ensure their bottom line is met. Soon she and her band of compatriots are banding together to defend their health, properties and livelihood.

True or not it doesn’t take much to dream up government officials ‘colluding’ with insurance companies to keep the lid on a million person tinderbox. Something, after all, (inertia? fear? lack of leadership? money??…take your pick) must explain the federal government?s strange unwillingness to even to begin to treat ME/CFS seriously for so long… Conspiracy buffs heads will wag furiously as they read this book; others will probably furrow their brow and think bit more…

Where ever you stand on the ‘reason for government neglect?’ question, ‘Chronic Fatigue Syndrome: A Novel’ is sure to delight. A quick moving tale it’s an entertaining introduction to a disorder a lot of people just don’t know about. A nice blend of science and passion, it’s just about the right length, and it’s got a catchy story (people who aren’t who they say they are, there’s a love story, a death, a show down….and even just as in Floyd Skloot’s CFS novel, ‘Patient 002′ a helicopter scene). Carol writes with the conviction of someone who did find an answer and now wonders, why it took so long.

“Chronic Fatigue Syndrome: A Novel” is an eye-opening entree for the uninitiated and a rousing read for those in the know. Highly recommended.

Patient 002 by Floyd Skloot (2007)

In this heartrending and often hilarious fictionalized account of the early Ampligen trials in chronic fatigue syndrome, noted essayist and poet Floyd Skloot hits the mark in his first novel in over a decade.  

Skloot’s wry humor serves the subject as he charts the swings of hope and the despair as some patients improve miraculously while others languish and all begin to question the motives of the company producing the drugl

Ampligen’s twisted history with CFS began early with patients threatening lawsuits when they had trouble getting the drug.  Skloot takes it a step further as his monkey-wrench gangish cast of characteris fight for their health against big (well, actually little) pharma – a fight unfortunately that is ongoing, in different guises, today.

In the Shadows of Memory (American Lives) by Floyd Skloot (2004)

Almost overnight Floyd Skloot went from being a high-level manager and long distance runner to a man with severe cognitive problems walking with a cane. His disabilities are harrowing but Skloots acute sensibilities and humor keep his story from becoming maudlin.

Now suffering from severe memory loss, Skloot takes us back and forth from his present to his difficult childhood scattering insights like leaves as he rebuilds his past and uses it to understand his present. A novelist, poet  and essayist no one writes more poignantly about the loss and overcoming loss associated with chronic fatigue syndrome more poignantly than Floyd Skloot.

Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson


Check out the inside story on the heady days as chronic fatigue syndrome (ME/CFS) exploded onto the national scene and the late 1980′s and 1990′s. Hillary Johnson is a born storyteller and what a story this was as CFS patients, physicians and researchers clawed and scrapped to gain recognition. A medical thriller and scintillating read as well as cautionary tale for anyone with a controversial disease.  Certainly not the last word in this era with Hilary Johnson perhaps substituting malfeasance for simply downright incompetence but nevertheless an absorbing read. The latest edition was just updated.

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