Wednesday, March 2, 2011

Review of Chronic Fatigue Syndrome: A Novel, by Caroline T. Anderson

Chronic Fatigue Syndrome: A Novel is a self-published work written with the intention of raising awareness about CFS.  This is a good thing, and I commend the journalist working under the name Caroline T. Anderson for her compassionate intentions.  I enjoyed parts of the book, but I also found (as in every other self-published book I've read), that it needed something to climb into the class of a fine novel.  I wished the author had worked with a publishing company to benefit from the advice of their experienced fiction editors.
  
However, the novel is fun for a person with CFS/ME to read  because the book has a happy ending. Furthermore, it is a very short novel, 160 pages, large print, double-spaced.  The characters tend to be stereotypes and could use some fleshing out so that readers better identify with the challenges they face.  I also wanted the author to tie up several loose threads, like telling us what really happened with the guy at the CDC. 

As narrator, Anderson clearly identified with the heroine of the book, the financial journalist Alistair McKenney, who lives in a small town in Ohio on a farm, tending to her horses and chickens as she writes and researches 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 dis;covers the mystery illness has appeared in other communities, and has been misnamed CFS.  And the more she researches, the more she starts to suspect 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-virals. 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 don’t want to pay out claims for a million to four million Americans. The CDC's motivation is not clear.


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.  If I hadn't purchased the book, I surely would have put it down before I got through page 10.  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.

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 MRI’s 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 Alistair’s farm stopping a few feet from her pond.  Immediately we know the guy who gets out of the car is trouble (if you’re 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 driver’s 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 won’t 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.

One conceptual problem with the story is that 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 they’d 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 Lerner’s 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.

I wished the author had taken the time to educate herself more about theories and research on this illness besides the new retrovirus thesis, which may or may not turn out to be true.   I wish she had found a way to show the difficulties patients with this illness experience in their daily lives, and in their search for understanding and treatment. 

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.

9 comments:

  1. This is an interesting point of view on the novel. I have read it along with some family members and friends and very much enjoyed the untold story about bureaucracy. I found it comforting to know that there is a motive behind the insurance companies treating myself and the disease like dirt.
    I have been to the author’s website (cfsnovel.com) and it seems to me that she has done extensive research. She has three different section covering different issues associated with CFS (Research Links, the Money Trail, and CDC Roadblocks) and provides sources associated with each. She even gives links for CFS sufferers to go to for antiviral treatments and information.
    I think that her “boring quotations at the beginning of the book” were necessary. It was a way to educate the reader with the challenges CFS patients face and for those readers not particularly familiar with CFS, provide them with background information.
    If your blog is all about a search for your cure, I would think you would appreciate the author’s efforts and her exploitation of the real problem.
    I know we are all looking for the same thing with CFS, a cure, sympathy, and answers and I hope for all the best for you.

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  2. Thanks for your comments. It's nice we can post our opinions on line and have discussion with others who have different views. I even heard from the author today, which was exciting.

    I've read some published novels I couldn't get through because I didn't like the writing, and I've seen book reviews in the NY Times about novels that big publishing houses took on which the reviewers didn't like. We have a world of great diversity with many differences of opinion.

    I've passed the book on to a friend, and I do think people with CFS and their friends and families should read it, which is why I posted a review of it on my blog. This book won't get reviewed by the NY Review of Books.... If my comments, and your disagreement get more people to read it and put in their opinions, all the better!! Thanks for sharing.

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  3. Caroline Anderson's comments appeared earlier today but have disappeared.... Caroline, I'd really love to share them, so please either repost or let me know whether you're okay with my posting them here. (Janis Bell)

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  4. Wow! I'm Caroline Anderson, author of Chronic Fatigue Syndrome: A Novel. I have had both good and bad reviews of my book, and I can take it, but there are some things in this review I feel the need to answer.

    "It could also use quite a bit of rewriting to flesh out the characters, who tend to be stereotypes."

    I didn't want the characters fleshed out. I didn't want the book longer or the characters more complicated. I wanted the focus to be on the investigation.

    "One conceptual problem with the story is that Big Pharma is nowhere to be seen."

    The antivirals I am on are generic. Generic drugs make no money for Big Pharma, but can stop the replication of viruses including Epstein Barr. It's my contention that doctors don't treat Epstein Barr and other viruses for the very reason that generic drugs work and therefore Big Pharma has no reason to educate doctors.

    "Yet we know that, while some people are helped immensely with anti-virals..."

    The novel states that patients got worse on the antivirals. I also say that the antivirals are not the cure, but rather take some of the load off the patients until the day comes when the retrovirus can be tracked down and treated.

    "I wished the author had taken the time to educate herself more about the illness and its diverse manifestations."

    I have file cabinets full of research on CFS. I've listened to or attended every conference and committee meeting out there and have read countless research studies. I have interviewed everyone from the CDC's Elizabeth Unger to Ian Lipkin from Columbia University, who is doing the XMRV study for the NIH.

    "I wish she had found a way to show the difficulties patients with this illness...."

    Of everything you wrote, the above is what I feel most strongly about. We can find examples of the difficulties CFS patients face on a daily basis EVERYWHERE: Blogs, forums, books, magazine articles, movies, Facebook, tv talk shows, etc. Boo Hoo. I specifically did not want another book about the woes of CFS patients. Pick another book for that.

    I wanted action. I wanted to get to the heart of the problem on why progress isn't being made.

    I want CFS sufferers to feel empowered, not felt sorry for from tales of woe.

    I also feel these stories of woe are egocentric in nature. I don't believe healthy people are moved by the difficulties faced by CFS patients. Well, maybe they are for a few minutes, but overall they don't prompt action from the healthy. If they did, more would have been done by now.

    These stories don't make our doctors more compassionate, insurance companies less greedy, our families less resentful or our politicians more engaged.

    These stories of woe may make the CFS patient feel heard, but I don't believe they do much to advance the overall issue.

    I feel these continual descriptions of suffering CFS patients keep us stuck. They keep us stuck focused on our woes instead of finding a way to solve our problem. Feeling sorry for ourselves won't create change. I want us to focus on what will.

    From your bed, get on the Internet, or the phone, and help us find out what's going on at the CDC. Help us find out who can make things change politically, scientifically and monetarily. When you get tired, take a nap, and when you wake up, keep researching. Turn off the tv. Stop talking about the distress of your life. Help find out who is behind this cover up and get mad.

    Sincerely,

    Caroline T. Anderson

    THANKS Caroline (reposted with Caroline's permission)

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  5. I haven't read the book yet, it's on order, and I will write a review of it myself on my blog when I've read it.

    That said, I have to agree with Caroline's comments. Everybody who is interested already knows how we suffer. Those who don't know, don't want to. Those who can't find the virus or retrovirus don't want to and they don't want anyone else to, either.

    Before I ever heard of Caroline's book, I had thought of writing something similar. I, too, would have written about the mystery of how the misused power of money and politics have trumped science for nearly 3 decades. I have just begun to dig through the cesspool of information on how UnumProvident and other disability insurers have hijacked governments and minds and how they ARE STILL DOING IT!

    See the blog of a former claims adjuster for Unum, who now works for disability claimants:
    http://lindanee.wordpress.com/2011/03/01/unum-forcing-medical-care-what-now-and-what-next/

    Read my blog: http://biomedicalmecfs.blogspot.com/2011/01/unum-is-still-doing-it-to-disabled.html
    Be sure to read the comments for a transcript of a BBC broadcast that has disappeared from the internet.

    Unum may be the single biggest reason for the malfeasance of the US and UK government health beauracracies. They pull the strings of puppets Simon Wessely, Michael Sharpe and all the psychobabblers of UK. Those very psychiatrists were "consulted" by the CDC when they changed the name of the disease from myalgic encephalomyelitis to chronic fatigue syndrome and then watered down the criteria for a diagnosis so that they could morph the disease into something so nebulous that no one could define it let alone research it. They had a plan and they are working it - right now!

    Those psychobabblers are not stupid. They are greedy and malicious, the Bernie Maddoff's of science, medicine and health care. They should be where he is - in prison.

    They have committed crimes against humanity. Like the Jews, Catholics and gypsies in the concentration camps of Nazi Germany, it will do us no good to whine about how badly we are treated. We need to fight back with information and education for our elected representatives and contributions to WPI.

    A novel is supposed to entertain. If this book gets even one of the disinterested family members & friends of the 17,000,000 ME/CFS-stricken, or others who wouldn't listen to the facts in any other way, then it will help us all.

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  6. I loved the book. Couldn't put it down. I thought maybe I was crazy so I looked up some other reviews. Dr. Jason from DePaul University called it "gripping and well written." I agree. Here are some others: From CFS Central

    http://www.cfscentral.com/2011/01/go-ahead-make-my-day.html

    From an author on Suite 101
    http://www.suite101.com/content/chronic-fatigue-syndrome-a-novel---book-review-a354729

    Another http://www.acomfortablesoul.com/blog/?p=537

    Everyone is entitled to their own opinions, I just can't get over how different our opinions are. Guess it's one of those love it or hate it things.

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  7. If you find yourself tired or feeling cold when everyone else is wearing short sleeves, you might have a thyroid that's out of whack. I took bovine thyroid and it restored my health and overall well being. It works.

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  8. I read the book, but thought "Caroline's" website did a much, much better job of accomplishing what she set out to accomplish (as described above) than the novel did.

    And with all due respect, I have to agree that had the characters been fleshed out, then more people WOULD care. They came off as really hokey, and just not believable -- especially the incredibly naive doctor who had to have a reporter tell her that the CDC isn't on her side.

    And the ending...well, let's just say that even Frank Capra wouldn't swallow that hokum.

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  9. I guess I get exactly what the author was trying to do. The book isn't about PEOPLE with CFS. It's about the money and CDC bureaucracy. There are tons of books about PEOPLE with CFS. You guys make it sound like she was insulting people with CFS by not expanding the characters. Why do all books about CFS have to have the same dimension -- only talking about the patients? I think it's weird that you guys don't get that. I also think it's weird that you call the characters hokey. Has anyone watched tv lately? Anderson is trying to write an Osler's Web for the masses. The masses won't read anything complex. It is a simple book, fast moving to EDUCATE people about the disease. The whole idea of explaining the disease at the beginning was to educate. I think it's weird that you found it "annoying." Why would explaining the disease to a lay person be annoying and if you know so much about the disease, I would think you would get that others don't. Her website is good too but pretty technical. There's no question the book isn't a work of art, but that's not the point. I think you should quit over analyzing it an just have fun with it. I think the book can reach a lot of people.

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Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at drjanisbell@gmail.com I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.