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Novels about ME-CFS

Blog entry posted by JanisB, May 4, 2011.

Have you ever wished for a book you could give to something so theyd REALLY understand what you are going through? Nasim Jafry's The State of Me does just that in the form of an entertaining novel. The author did an amazing job of turning the horrible experience of living with chronic, disabling ME into a story that is funny, yet sensitive.

The story takes place in Scotland, where our protagonist, Helen Fleet is studying French at the University. She comes down with ME soon after she departs for a year abroad in France. Worsening symptoms force her to return home before Christmas break. What follows are multiple ordeals: getting a diagnosis; exploring experimental treatments; coping with a failing body and brain; navigating the complexities of relationships with lovers, family, friends, and well-meaning strangers; and dealing with the psychological trauma of becoming dependent upon others. None of this is spectacular. Those of us with the illness have all been through it to some degree. But it is not something healthy people understand, nor do those with recognized, less disabling, chronic illness.

Many good stories have been written about debilitating chronic illness, almost always presented through the point of view of a lover or family member routing for the survival of the afflicted. Think of La Boheme (tuberculosis), the film Hilary and Jackie (multiple sclerosis), the popular novella Love Story (leukemia). Over three centuries of fiction writing, illness, often fatal illness, is a theme mined for its dramatic potential. After all, what could be more suspenseful than worrying that the hero or heroine will die? Of course, if the hero or heroine dies, the novel comes to a screeching halt. ME-CFS does not seem to provoke passionate displays of family activism, perhaps because death takes its time, slowly draining its sufferers of vitality. On the contrary, most sufferers report a break down of relationships.

Jafrys heroine experiences this breakdown with her boyfriend and other friends; her mother remains supportive throughout. She brilliantly takes us through the experience from the point of view of the patient. With wit, sensitivity, pathos and hope, she leads us through Helen's transformation, and so transforms our (the reader's) understanding. We follow the trajectory of Helen's dashed hopes, we watch her reconstruct new hopes, and eventually share her joy at realizing two of her greatest dreams. It is a journey from victim to survivor to thriver.

The success of the novel is due to Nasim Jafry's wonderful voice, which is wry, consistent, clever, and observant. A few carefully chosen details convey a great deal.

Internal monologues are rendered with a variety of techniques, including one I found extremely effective for conveying the internal dialogue people with this illness hear in their heads as they try to justify their behavior to a confused, judgmental world.
stranger What do you do?
me I work one afternoon a week. I've been ill (for fifteen years).
stranger You don't look ill.
me That's good, isn't it?
stranger You seem to have a lot of energy
me That's 'cos we're sitting down just talking.
stranger Why can't you do a job where you can sit down?
me Because it's not just my legs. If I overdo it, my arms feel mashed up and my head shuts down. I can't think straight.
stranger I see.
me You don't believe me, do you?
stranger No, not really
me I've got more fucking 'O' grades and Highers than you've had hot dinners, so please just leave me alone (into myself).
You can see from this excerpt how much content and emotion Jafry conveys in a few short lines near the beginning of the book.

I had a very different response to Chronic Fatigue Syndrome: A Novel by Caroline T. Anderson. I enjoyed parts of the book, but I also found that it needed something more. It is a very short novel, 160 pages, large print, double-spaced, and a fast, easy read. It moves quickly after the first two chapters, as it takes us on the exciting journey of a financial journalist named Alistair McKenney.

Alistair lives in a small town in Ohio on a farm, tending to her horses and chickens where she writes for a financial daily. As the novel opens, we meet Alistair, a single mother with teenagers, researching the strange illness that has floored a high percentage of people in her small town, most of them women. She soon discovers that this mystery illness has appeared in other communities, and has been misnamed CFS. And the more she researches, the more she suspects something unfair going on.

Soon Alistair suspects a cover-up involving government and insurance companies, who would rather save money, rationalizing their obfuscation of the truth by denying the reality of the illness, especially of its contagious nature. Alistair soon educates the only physician in town who is trying to treat the afflicted patients, and inspires this physician/friend to put her patients on anti-viral pharmaceuticals. Her teenage kids get involved in the research, being internet whizzes like all teenagers, as do several adults in town, who gather at Alistair's house at night with their laptops looking for information to connect the dots between what seems to be a conspiracy to prevent CFS from being studied and treated. The ostensible motivation for this evil collusion of government and insurance company is greed. The insurance companies dont want to pay out claims for a million to four million Americans. The CDC's motivation is not clear.

The principle conflict in the novel centers on what the CDC, in cahoots with insurance companies and their paid research scientists, are willing to do to prevent CFS from being identified as an organic illness of viral origin. In a scene where Alistair confronts the CEO of a big insurance company, the author reveals the hypocrisy and cruelty of policies that deny payment for lab work and MRIs that would show viruses and brain lesions while denying disability to the same individuals for failing to prove that they have a true illness.

The story gets exciting about p. 50, when websites which the researchers have bookmarked start disappearing overnight, and the next day, a black Mercedes swerves onto Alistairs farm stopping a few feet from her pond. Immediately we know the guy who gets out of the car is trouble (if youre slower to catch on, the author gives you lots of signs, like the pregnant mare taking an instant disliking to him), but our heroine is taken with the drivers good looks and begins dating him. As the story progresses, the handsome mean guy tries to discourage her from moving forward with her intended newspaper expose' on the conspiracy while she, a gutsy heroine, becomes all the more determined. I wont give away the rest of the plot, except to say that there are several exciting encounters between Alistair, this guy, and the insurance company whose stock will plunge in value once her story is published in the financial newspaper.

The problems with the book are several. First, the characters tend to be stereotypes and could use some fleshing out so that readers better identify with the challenges they face. Second, the author fails to tie up several loose threads, like telling us what really happened with the guy at the CDC when Alistair gets there for her appointment and is denied entrance. Third, Big Pharma is nowhere to be seen. If antivirals were as effective as Anderson makes them out to be in the novel -- returning everyone in town to active lives --Big Pharma would be seeing billion dollar signs in the profits theyd make from getting their drugs approved as standard treatment for this illness. They have the money and the political clout to accomplish this. Yet we know that, while some people are helped immensely with anti-virals (see Martin Lerners work at http://www.treatmentcenterforcfs.com/), many cannot tolerate them, get worse on them, or take them without improving at all because their infections are bacterial, fungal, or environmental toxins have created the immune dysfunction that has allowed numerous opportunistic infections.

Fourth, the patients are minor characters on the side lines, just as CFS patients are in real life. The reader never gets to know a person with CFS as a human with hopes and feelings and conflicts. Alistair is full of energy and grit. We root for her because we want to be like her -- idealistic, courageous and determined.

It will probably annoy you, as it did mean, to read through the many boring quotations at the beginning of the book, most from researchers claiming CFS is a psychosomatic illness. Expanding the novel with a sub-plot, seen through the point of view of a patient getting this kind of treatment from a doctor, could have helped the reader feel the outrage Alistair feels on behalf of her friends and townspeople. Conflict leads to interest, whether an external conflict or an internal conflict in the mind of the characters. The first part of the novel could use more of this.

Still, I am glad Anderson took on CFS, and made an exciting story that shows people trying to do something positive for people with this illness. Alas, exposing government and insurance company incompetence and corruption as done by journalist Hilary Johnson in Oslers Web has not yet produced the transformation in attitudes and actions we all seek.

Both authors are commended for exploring their efforts to raise awareness and transform attitudes through the vehicle of fiction. Read these books and share them with your friends and family.
  1. justy
    Hi JodyB, thanks for the review of the state of ME. I read this book about 6 months ago and really enjoyed it, although it isnt a literary great it is easy to read and would help anyone who doesnt understand the disease to see what sufferers go through over the long term course of their lives.
  2. RestingInHim
    Thank you for bringing our attention to this book, and for the great review. i found it on kindle!

    resting...thankful to be able to read today!