Love and Fatigue in America

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Last Updated: 21 January 2016 21 January 2016

Reviewed by Jean Zimmer

On April 23, 1991, at 8 p.m., a 40-year-old British economist, international consultant, novelist, and university instructor collapsed on the floor of the Sta-Fit gym in Spokane, Washington. He describes the moment:

It’s funny how the sitting down doesn’t end the going down—like gravity does not know where to stop, and its giant hand persists in pushing on my shoulders, insisting I go right through the floor, or failing that, to be flattened on it like paint. I cannot let this happen. It would look bad. It might attract attention. I concentrate on the countervailing force offered by friction, back pressed against the wall, feet pulled up and flat on the carpet. I stare with unseeing eyes—they are busy playing their own game of light and dark—a hint of a smile on my lips. Not ridiculous, I hope.

Thus begins the narrator’s 21-year journey with chronic illness. King’s just-released autobiographical novel is a heart-baring exploration of what it is to lose the classic measures of success—a thriving career, prospects of a family, and financial security—when they are supplanted by illness. In poignant parcels, the narrator describes his comic-tragic journey as he navigates, in faltering steps, the strange and unfamiliar landscape of our profit-driven healthcare system.

Occasional illness is a fact of life for most of us. As I write this, my teenage son lies in bed, red-nosed and sneezing, sequestered with a book and a box of Kleenex. He awaits, with full expectation of attainment, the return of health—in his ideal world, before his friends’ Frisbee game begins this afternoon.

Others don’t rebound so quickly or completely. My family practice physician once referred to them, not unkindly, as his “fat file” patients—the ones whose medical files overflow with test orders and memos from repeated office visits. Most of us have known a “fat file” person: the cousin diagnosed with multiple sclerosis; the teacher who left her job when she came down with Lyme; the guy up the street with diabetes and a gimp knee; or the coworker medicated for chronic depression. For these people, the problems don’t go away. Often, they seem to compound.

If we are decent (and most of us are), we feel sorry for them, in their pain or debilitation. We do what we can: We bring them supper, we drive them to doctor’s appointments, we rake leaves from their lawn, or we listen while they talk about their problems.

If their illness lingers, and especially if their complaints mount, our helping hands might falter. We lose patience. Could they be malingering? Nothing we do seems to help much. Perhaps their disability insurance runs out. Their stories of an uncaring healthcare system scare us. We may drift away, breathing excuses about our busy lives. We might run.

In Love and Fatigue in America, the narrator muses about the person he has become:

You look well/You are not dying/Your complaint is modest/You are going to be trouble for a long time/Your brain does not work/Your charm has gone with it/You are inconsistent/Sometimes perversely well./You are unreliable/You explain your unreliability/Which is like whining/You cannot explain your illness/You are inconvenient, thoughtless, boorish, charmless, witless/And don’t do your share/You are not yourself./There is no place for people who are not themselves/You are not good at being ill…

Prior to his “profound overturning,” the narrator is, by most contemporary measures, at the top of his game. He has risen from a blue-collar background in a London suburb to earn a Ph.D. in agricultural economics. His first career in Africa and Asia as a socio-economist and institutions expert is supplanted by a second career as an award-winning novelist. Fit, seemingly fearless, and 40, he has negotiated world continents, closed on impressive contracts, won at love, and acquired an impressive, supportive community of friends.

His metaphorical crash-landing, with symptoms of what first seems like a bone-crushing flu, upends his life and career. As his illness persists from weeks to months to years, his girlfriend, friends, and colleagues drop away, one by one, from his life. Ironically, those who don’t abandon him use him—prone, sick, silent, but also sympathetic—as a sounding board for their own stories of emotional and physical suffering.

After receiving a diagnosis of chronic fatigue syndrome (CFS), the narrator follows the advice of a parade of doctors and alternative health practitioners, many of whom are portrayed as comically incompetent. Who knew that a story of getting sick could be funny? King weaves humor through his novel.

Unflappable college students meet with the narrator during his academic office hours, offering threats, attempts at coercion, or intimate details of their sex lives. His alternative medical practitioner in Santa Fe drives a red BMW with crash damage, which he soon replaces with a second vehicle that soon shows up with crash damage. At one point, the narrator kisses a potential murderess, “but, hello, this is California.”

Many people afflicted with CFS express frustration that the descriptor “chronic fatigue” reduces the syndrome to an undeserved simplicity. Outside the U.S., CFS goes by the weightier name “myalgic encephalopathy.” Beyond incapacitating fatigue, classic symptoms of CFS include impaired concentration and memory; muscle and joint pain; sleep disturbances; tender lymph nodes; sore throat; headache; and worsening of health following physical or mental exertion. The syndrome crosses lines of education, affluence, race, and gender.

No one knows how people get CFS, but a brain-targeting virus, genetic susceptibility, and a compromised immune system are suspected contributors.

The narrator seeks a recovery that, for a while, he does not doubt. As years pass and his condition deteriorates, however, his bewilderment, humiliation, and suffering increase while his hope diminishes.

With each remission I am convinced that the recovery will be permanent, and each time I am proved wrong. This never changes. Health is unable to imagine being ill; illness cannot recall a state of health.

Although he is a world traveler accustomed to harsh conditions, the narrator finds himself at a loss when he faces the foreign and confusing landscape of illness in the United States. He compares the U.S. healthcare system with the nationalized medical system of his homeland, England—a system that requires of its patients much less paperwork, permissions, and payments.

You remember visits to the doctor as blithe affairs. The burden of management customary to Americans strikes you as astonishing—staggering—in its complexity, trickery, and venality. You wonder that such a situation could ever be taken as normal.

The narrator points out “the labor of being sick in America,” a country where the more a person is weak and compromised, the more he must advocate for himself. Because he is so ill that he is limited to his sofa, that is the site from which he conducts his business. He stashes medical bills and insurance receipts in cracks between cushions and on the floor beside him. Using a telephone balanced on his chest, he works daily, until sickness and exhaustion overwhelm him, to clarify, defend, and understand his condition and his health benefits.

The narrator struggles to keep his university job, but he has numerous setbacks, such teaching “a horrific class” during which his head falls onto his desk and will not come up.

Over time, the narrator learns to ration his energy. He learns to cope with his incredulous coworkers. He describes the paradox of trying to maintain his job and maintain an appearance of a normal life:

The intermittent need to prove to doctors that my illness is not in my mind-when clearly my mind is affected—and to prove to the company’s private investigators that I am not disabled—when every day is taken up by trying to seem not disabled—causes paroxysms of internal conflict.

Over time, quietness, solitude, and low-grade panic overtake him. “It’s hard not to blame yourself for illness,” he writes, in perhaps his closest admission of self-pity. His income and savings dwindle. He struggles to maintain his job. He longs for a home and family.

Remarkably, he achieves love, in noncontiguous chunks: tender affection for a woman and her daughter, sex for money, and a more tenacious love from his dog Arthur.

King’s book was written from within the bounds of his own illness, and the format might be taken as evidence for his labor in writing it. It is crafted as a series of dozens of short chapters, some as short as a single page. They include narrative, essays, lists, and poems. King’s narrator is an appealing character: His illness seems to have made him, patient, kind, and wise—he inhabits a shrunken world, yet he maintains a wide worldview.

The book is fiction, but King’s use of first-person captures a real man—one with authentic, flawed retrospective recall. The novel reads a little bit like a diary, including a few steamy love scenes and witty, observant notes on topics as diverse as strippers, military life, and ambition.

Although the book weighs in at 254 pages, it’s hard not to want a little more about the main character’s origins. Who were his barely-mentioned parents? What was life like in suburban London for an introspective child? What series of events turned a provincial lad into a globetrotting economist?

The story opens with an exuberant and hopeful narrator circling in a jet above the city of Spokane, Washington. It concludes in a small town in western Massachusetts, with the narrator contemplating the gains and losses of his quiet existence.

From his place of retreat, the former world traveller and international problem-solver describes his “horizontal life” as peaceful, with appreciation for small beauties and subtleties. In a section titled “Lost and Found,” he comments

I have had pressed on me by illness the eternal good sense and wisdom of being present in my body, and relaxing the self in something larger … the nature of CFS is an object lesson in oneness. Which is an object lesson in love. You are lost, yet you are found.

An account of being sick could be a hard sell in today’s book market. If the daily news itself can be a downer, why read a narrative about illness and disability?

Answer: Because fate is fickle. The book’s publication follows closely on the U.S. Supreme Court’s review of President Obama’s healthcare law. King’s well-crafted book raises important questions about how our society treats sick people. What happened to the narrator could happen to anyone. Perhaps the book could help inspire a remedy for a healthcare system that doesn’t seem very caring.

 

Roger King is the author of four previous novels: Horizontal Hotel, Written on a Stranger’s Map, Sea Level, and A Girl from Zanzibar. He lives in Leverett, Massachusetts.

Jean Zimmer is a freelance writer and editor based in western Massachusetts.

Wang, H. et al., "The Role of IL-8 in Patients with Fibromyalgia: A Prospective Longitudinal Study of 6 Months"

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Last Updated: 08 November 2015 08 November 2015

Wang, H. et al., "The Role of IL-8 in Patients with Fibromyalgia: A Prospective Longitudinal Study of 6 Months," Clin J Pain 25 (1) (2009): 1-4. PMID: 19158539

(Note: IL-8 or Interleukin-8 is a chemical with an important role in the immune system.)

Methods. IL-8 in sera was measured in 20 patients with FM undergoing pain treatment and 80 healthy participants at 4 fixed time points: at the beginning of the study, at 10 days, 21 days, and 6 months, respectively. Pain intensity, back function, depression, nicotine/alcohol consumption, and medication were assessed in the patient group and correlated with IL-8 levels.

Results. Before and during the inpatient therapy, the serum level of IL-8 was significantly higher in patients with FM compared with controls (P<0.001), but did not correlate with pain intensity and medication. Already at ten days into the study there was a significant reduction of IL-8 serum level (P=0.023) in the patient group. Six months after multidisciplinary pain therapy, IL-8 serum level in FM patients was still significantly higher than controls (P=0.044) but reduced approximately to normal range and correlated significantly negatively with pain intensity (r=-0.782, P=0.001). Patients with FM had significantly less pain (P<0.001) and better back function (P<0.001) at day 2 than at day 0. In addition, in patients with FM, IL-8 serum level correlated with nicotine consumption (r=0.471, P=0.042).

Conclusions. Our results suggest that IL-8 level contributes in patients with FM, but their pain intensity and back function can be improved under influence of multidisciplinary pain therapy without need of an anti-IL-8 therapy.

Dry Mouth Can be Detrimental to Your Health

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Last Updated: 09 November 2015 09 November 2015

by R. Sanderson in 2012.

Drs. Ava J. Wu (professor of orofacial sciences) and Troy E. Daniels (professor of oral medicine and pathology) at the University of California, San Francisco and contributors to The Sjögren's Book, Chapter 16 on "The Dry Mouth", report that 15% of adults in the U.S. suffer from dry mouth.

Dry mouth is a common problem for people with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM), often as a side effect from medications used for symptom management.

Antidepressants (especially those in the tricyclic family), muscle relaxants, antihistamines, some pain medications, and agents for overactive bladder are some of the drugs that cause dry mouth. This group of medications have anticholinergic properties—they work by targeting certain chemicals within the nervous system and their mechanism has an increased potential for certain adverse affects, including but not limited to the regulation of salivary function.

This type of dry mouth is classified as "medication-induced" and it has become increasing more frequent, even in the general population. Patients should report this side effect to their doctors and see if other medications can be substituted.

If switching medications does not help or if patients need to use certain medications, then it is very important to add adjunct therapies, partly for comfort but also to lessen long-term effects of continued dryness.

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Dry mouth can also be a sign of underlying disease

Sicca syndrome or sicca symptoms are often listed as additional features in ME/CFS or FM—the term "sicca" refers to dryness of the eyes and mouth (i.e., it describes a symptom). When problems with dryness become chronic and are accompanied by other symptoms or new problems, including noticeable changes in dental/oral health, patients should be professionally evaluated to determine its cause.

The reason to do so is because dry mouth can be a sign of many underlying diseases such as certain types of diabetes or central nervous system diseases, infections, amyloidosis, sarcoidosis, and autoimmune disorders.

For example, dry mouth and dry eyes are the hallmark symptoms of Sjögren's Syndrome (SS) and dryness, in this case, is usually the result of disruption or malfunction of exocrine gland secretion. It can affect other organs and lead to serious problems without medical intervention and follow-up.

SS may be accompanied by other illnesses (i.e., connective tissue diseases, certain thyroid problems, celiac disease, and other autoimmune disorders), including FM. Although FM is not an autoimmune illness, about half of the patients with SS will report symptoms of FM (i.e., as exacerbation of pain, fatigue and cognitive dysfunction).

A comorbidity between FM and SS has been established (i.e., several studies show it may affect 47 to 55 percent of patients); therefore, it is not unreasonable that patients who develop new symptoms or worsening of existing symptoms get worked up for other potential conditions (i.e., doctors should not attribute everything to FM nor any other existing primary diagnosis).

[Comment: Even though ME/CFS is not mentioned as one of the diseases or conditions associated with SS in the book used for this article, leading researchers/clinicians have found SS in a subset of ME/CFS patients. The same advice would apply to patients with ME/CFS.]

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Important functions and properties of saliva

The importance of saliva and adequate salivation is a health issue that often goes unnoticed.

In SS literature, saliva/salivary gland function is well covered (to a large extent due to its significant role in that illness) and is held with great regard as something that can greatly diminish one's quality of life once it is lost or severely impaired.

Saliva is essential in so many daily functions: eating, tasting food, chewing, swallowing and digestion. Lack of saliva or adequate lubrication makes speaking more difficult and voice quality can suffer.

Protein components in normal saliva have antibacterial, antifungal or antiviral properties which can decrease the bacteria that can stick to teeth.

Normal salivary flow has the ability to naturally wash away acids and bacteria and it provides a buffer against acidity, including gastric reflux.

Moreover, normal saliva contains beneficial levels of calcium and phosphate that help to replenish these elements to the surface of teeth. When this wonderful biologic fluid becomes compromised, so might be a person's health and well-being.

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Problems caused by lack of saliva or chronic dryness

The more serious consequences and complications of poor salivation and chronic dryness may not be immediately recognized. Patients may find their mouth has become sensitive or painful, which could be caused by the thinning and irritation of oral mucosa.

Patients may find redness and crusting in the corners of their lips. They may suffer frequent fungal infections (i.e., patients with SS tend to present more often with erythematous candidiasis than typical "thrush"). In susceptible individuals, an overgrowth of this organism can cause their tongue to become red, grooved and feel raw (i.e., burning tongue).

Bad breath (halitosis) can develop from a build-up of odor-causing bacteria. People may have trouble with dentures because their tongue, from lack of oral lubrication, keeps pushing them out of place.

Progressive deterioration of teeth, increased cavities, particularly those found along the gum line of teeth, and increased periodontal disease are other frequent problems linked to chronic dry mouth.

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Treatments to alleviate dry mouth and associated problems

Although dry mouth can have many diverse causes and require individualized treatments, most treatment strategies focus on improving oral comfort, alleviating symptoms, and finding ways to reduce further damage to teeth and oral tissues. Patients should always consult with their health care provider before initiating treatments on their own.

Current management recommendations include the following:

• Hydrate—drink water, in frequent, small sips that will help to hydrate and cleanse the mouth. Consume small amounts of water and limit total intake (to an amount that still provides adequate hydration) throughout the day, which may reduce frequent urination (i.e., it is not necessary to consume huge amounts of water for this type of hydration).

• Moisturize—try some of the products promoted for dry mouth, like rinses, gels, sprays or lubricants that are applied inside of the mouth or to the lips. These can be especially soothing when applied at bedtime, when traveling in a dry car or public transportation, or whenever water is not readily available.

• Chew—chewing gum or sucking lozenges helps to stimulate saliva production. The chewing motion by the jaw is therapeutic because it actually helps to activate the glands that will start to release saliva. Gum sweetened with Xylitol is generally recommended because bacteria in the mouth will not respond to Xylitol as it would to simple, refined sugar. (But do not use Xylitol in excess, as it can trigger gastrointestinal problems).

• Humidify—set up a room humidifier while sleeping because salivary function is decreased at night, plus there is a tendency for more mouth breathing at night.

• Oral hygiene—strict adherence to daily oral hygiene is strongly advised in order to remove bacteria/plaque throughout the day (so brush after meals and use floss). Sonic brushes are preferred to clean teeth and tongue. It may be necessary to see the dentist more often for check-ups and cleanings. (Some patients may go as often as every 3 months).

• Fluoride—use of high-concentration fluoride toothpaste (some need a prescription), topical fluoride applications (creams or gels that can be applied at home) and fluoride treatments (applied by the dentist) are recommended treatments because fluoride can repair and strengthen the surface of teeth. Remineralizing solutions, with high concentrations of calcium and phosphate, have been shown to repair mucosal tissues as well as repair/prevent dental caries. Most of these products are available by prescription and the prescribing dentist or oral specialist will examine the patient and determine if these products are actually helping.

• Stimulate—salivary output can be further increased with medications (i.e., pilocarpine or cevimeline). These are available only by prescription and may not be suitable for patients with certain conditions. Relief is usually temporary and dose-related.

• Dietary changes—minimize sugar/sugary foods, especially sticky sweet foods, spicy and salty foods. Avoid acidic and caffeinated beverages, alcohol and tobacco.

• Treat—identify/treat fungal infections. If patients have persistent burning sensation in their mouth, they should be cultured and treated with topical antifungal preparations.

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Where can patients find help for dry mouth?

Very often, dentists will be the first health care providers to pick up on signs of dry mouth. They often receive samples of over-the-counter products formulated for dry mouth and may be more familiar with the newer topical fluoride products or moisturizing agents.

They can help to select the most effective products. More often than not, if other prescription medications are needed, they will refer patients to their primary care providers. These drugs (pilocarpine or cevimeline) have side effects and must be used with caution in some patients; therefore, it is better for the patients if these are prescribed and monitored by the primary doctor who is more closely involved with their medical history.

However, most doctors should be able to provide a basic screening for dry mouth by asking questions about when and how dry mouth bothers the patient. They can check their salivary glands for tenderness or enlargement and order lab tests to screen for certain antibodies associated with some autoimmune disorders.

Patients may be referred to ear, nose and throat (ENT) specialists or oral surgeons for further evaluation of dry mouth. Oral surgeons (or other oral specialists) can perform tests to measure salivary flow rate, examine the quantity and quality of saliva produced, and if warranted, do a biopsy of the minor salivary gland (along the inside of the lower lip) to check for presence of lymphocytes, a component of SS and other diseases.

Lastly, there are Dry Mouth Clinics available at some of the larger medical centers, dental schools, and hospitals that do a lot of research.

[Comment: The majority of the information presented in this article on Dry Mouth is based on the book cited below. However, some personal experiences and suggestions are included in the last section for patients and where they can go for help. The Sjögren's Book is recommended reading material and the clearly marked chapters help patients hone in on specific topics.]

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References

1.Fox PC,  Singh ML, and Papa AS, "Treatment of Dry Mouth", in The Sjögren's Book. ed. Daniel J. Wallace, M.D. (New York: Oxford University Press, 2011), 201-209.

2. Vivino FB, "Diseases Associated with Sjögren's Syndrome," in The Sjögren's Book. ed. Daniel J. Wallace, M.D. (New York: Oxford University Press, 2011), 144-146.

3. Wu AJ and Daniels TE,"The Dry Mouth," in The Sjögren's Book. ed. Daniel J. Wallace, M.D. (New York: Oxford University Press, 2011), 157-167.
 
For additional information

National Institute of Dental and Craniofascial Research (NIDCR) provides information about Sjögren's Syndrome, ongoing research and the newest diagnostic criteria. (http://www.nidcr.nih.gov/OralHealth/Topics/SjogrensSyndrome/)

The Sjögren's Syndrome Foundation (SSF) is a credible source of information and it offers brochures, pamphlets, and information sheets that can be downloaded. (http://www.sjogrens.org/)

Jones, K.D. et al., "Fibromyalgia is Associated with Impaired Balance and Falls"

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Last Updated: 27 February 2009 27 February 2009

Jones, K. D. et al., "Fibromyalgia is Associated with Impaired Balance and Falls," J Clin Rheumatol 15(1) (2009): 16-21. PMID: 19125137

Methods. Thirty-four FM patients and 32 age-matched controls were administered the Balance Evaluation-Systems Test (BESTest), rated their balance confidence with the Activities-Specific Balance Confidence (ABC) Scale, and reported the number of falls in the last 6 months. The Fibromyalgia Impact Questionnaire was used to assess FM severity.

Results. FM patients had significantly impaired balance in all components of the BESTest compared with controls. They also scored more poorly on balance confidence. Overall FM severity (Fibromyalgia Impact Questionnaire) correlated significantly with the BESTest and the ABC scale. The BESTest and ABC correlated significantly with 6 commonly reported FM symptoms (excluding pain). FM patients reported a total of 37 falls over the last 6-months compared with 6 falls in healthy controls.

Conclusion. FM is associated with balance problems and increased fall frequency. Patients were aware of their balance problems. These results suggest that FM may affect peripheral and/or central mechanisms of postural control. Further objective study is needed to identify the relative contributions of various neural and musculoskeletal and other impairments to postural stability in FM to provide clinicians with methods to maximize postural stability and help fall prevention.

AABB's recommendation on ME/CFS and blood donation

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Last Updated: 25 November 2015 25 November 2015

The American Association of Blood Banking (AABB), on June 18, 2010, issued a Bulletin to its member blood collectors requesting that ME/CFS patients be actively discouraged from donating blood because of the "risk of transmission of XMRV" (Xenotropic Murine-Related Virus). In October, 2009 the journal Science published a study which presented evidence of an association of XMRV with ME/CFS. In making this recommendation, the AABB is concerned about the safety of the U.S. blood supply.  

[2015 editiorial note: Even though it was disproven in 2012 that ME/CFS patients are infected with XMRV, it is prudent to refrain from donating blood or tissue due to the high probability of being carriers of other infectitious agents. See p. 30 of ME/CFS: A Primer for Practicing Clinicians.]