LETTERS FROM THE GLOBAL PROVINCE |
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GP 27 August 2008: Obsessive-Compulsive Disorder (OCD): Chasing the Scent Ellie. Jessica Dunne of Chicago is finally out with Ellie, “a perfume in honor of her grandmother Eleanor.” In “An Underdog Pursues the Scent,” New York Times, August 21, 2008, pp. E1 and E3, we learn that she has been in love with perfumes forever, having peddled “homemade perfume made out of mashed-up honeysuckle, berries and other flowers” as a youngster. That she has a $180 scent on the shelves today is a testament to her doggedness, her dream life, and her gumption which got her to market for $100,000, all her savings, instead of the $10 to $20 million the giants spend to bring out their fragrances. High-powered consultants, nebulous focus groups, huge advertising budgets, endless PR, and instant vast distribution are their stock in trade—all calculated to puff up perfumes that are all things to all people. Amidst this noisy marketing she brings delicacy, a clean bouquet, and word of mouth. “She tracked down … Mr. Roundnitska, a perfumer who runs a fragrance laboratory in the vertiginous hills of Cabris, a French village near Grasse, the world’s perfume capital. Mr. Roudnitska’s father, Edmond … produced some of the great Dior classics of the 20th century, including Diorissimo and Eau Savage. His son designed a scent for Federic Malle, the French perfume impresario.” “By the end of 2006, after a stranger on a crowded subway train told Ms. Dunne she smelled great, she and Mr. Roudnitska finalized the recipe for Ellie.” Ellie, incidentally, has been followed by Ellie Nuit. Obsessive Compulsive Disorder (OCD). OCD is thought to affect between 1 and 3 percent of the population and is “most commonly characterized by obsessive, distressing, intrusive thoughts and related compulsions (tasks or ‘rituals’) which attempt to neutralize the obsessions.” Even after decades of study and gallons of rhetoric, it, like so many mental and neurological complaints, is not well understood. The shrinks and researchers talk with such authority about it that you would think they know something. But the most candid admit that we’re just at the beginning of the book, not the end of the story, and that we are years away from really getting a handle on OCD. We find that this is the case with a whole range of mental disorders we have examined, including autism, the subject of an earlier letter. Often, in fact, the science is going down unprofitable paths, and researchers are making assertions for which they have little evidence. As with Ms. Dunne and her $100,000 perfume, the layman would do well to realize that the cumbersome methodology and conclusions of institutions may be impediments to discovery as well as hopelessly expensive. Agility is not an attribute of our temples of medicine. The Basic Prescription Today. The basic accepted formula today for treatment of suffers is behavior therapy where the afflicted patient gradually learns “to tolerate the anxiety associated with not performing the ritual behavior.” This is combined with drugs “including selective serotonin reuptake inhibitors (SSRIs) such as paroxetine (Seroxat, Paxil, Xetanor, ParoMerck, Rexetin), sertraline (Zoloft, Stimuloton), fluoxetine (Prozac, Bioxetin), escitalopram (Lexapro), and fluvoxamine (Luvox) as well as the tricyclic antidepressants, in particular clomipramine (Anafranil).” The drugs bear watching. Sometimes they plain don’t work. Many have side effects that are not at all as trivial as practitioners would have one believe. In fact, it is terribly important to check all available clinical literature to become conversant with the sometimes rather dramatic side effects and to understand that many of the drug inhibitors have had the scantest of trials with adolescents who account for a substantial percentage of the OCD population. Commonly, prescribing doctors have not looked into the drugs with care, relying all too frequently on the reassurances of drug detail men from the pharmaceutical houses. One very thoughtful New York City physician says the problem with drugs is not when they don’t work but when they do. As he anguishes, “When they work, you have the devil’s own time weaning the afflicted off of them.” The pills themselves become a ritual. OCD’s Upside. What’s not mentioned about OCD is that many of us, not just the tortured 3%, demonstrate its traits that, in some part, are both helpful to the individual and an antidote to some of the evils of modern society. Untoward, repetitive thoughts are often a goad to creativity in many occupations—and certainly a prod to scientists with any genius. The heightened moral compunction and feelings of guilt it engenders put the lie to modern societies where vagrant conduct and cold amorality are tolerated. Ritual lies at the heart of religion, an impulse that if denied leads to self-destructive individual conduct and a society without moorings. We remember that the great Greek writer Nikos Kazantzakis reeled between atheism and religion—and suffered hideous affliction when he totally divorced himself from his spiritual impulses. We have noticed further that some OCDers have an eye for detail that eludes the rest of us, picking up on little vital signs that the ‘normal’ miss. Many OCDers appear to have a need to do things at their own pace and in their own way, truly marching to their own drummer. The frenetic beat of modern life is not for them, and they are constructed to resist it, as the rest of us should. Many of us are obsessives and compulsives, but unlike OCDers, the recordings in our minds do not get permanently stuck in one groove, but finally move on to the next note. Perhaps it should be no surprise that many, many famous, accomplished people have built wonderful lives in spite of OCD. Einstein, Beethoven, Darwin, and Michelangelo are but a few. The list rivals that for dyslexia, a disorder that affects a number of entrepreneurs who head startlingly successful companies. Banned in Boston. We think of Boston as a center of medical and academic excellence, but forget that it also has a deep tradition of censoring and excluding uncomfortable ideas. For instance, as a result of the Framingham Heart Study, the Boston medical mafia for years over-weighted the importance of serum cholesterol in heart disease, neglecting others factors, even excluding research that might point to a richer understanding such as that on folic acid. The Obsessive-Compulsive Foundation is headquartered in Boston, and much of the current dogma driving both treatment and research originates there. The fact is that we still don’t understand much about the disease and, for that reason, must play with a wider palette to better reckon with this disorder. Behavioral therapy and uptake inhibitors are fine as far as they go. But the layman, anyway, should study how music provides some relief (Sacks has generally looked at this in Musicophilia) the possibilities of meditation, the power of humor to lift an OCDer out of his or her funk, the uses of inositol, etc. We do not find that the progress made by conventional researchers is promising enough to stick to the narrow highways they are traversing. Of course, one should understand that many alternative explanations of the disease and alternative treatments have been forcibly repudiated—but that’s what competition-wrought researchers do. Open-minded scientific inquiry goes by the board in a world driven by grants from the Federal Government. For instance, the studies are few and inconclusive about the effects of meditation on anxiety disorder and OCD. And the powers-that-be at the major medical centers are not betting their careers on meditation. For every neurological disorder and for almost every disease it has become standard practice to look for mutant genes, in hopes that we can eventually see which genes go astray and rewire them in ways that will prevent, mediate, or cure the disorder. Probably this will have a long-term payoff, but it offers little to current sufferers. There’s a need to do more at the molecular level, which suggests that neurological researchers should know a great deal more about chemistry than they do. For instance, some of the more promising research we have seen on Alzheimer’s looks at the possibility of metal deposits and the like as a precipitator for the condition. We suspect that mineral and metal irregularities may play a part with OCD. Reading Up on OCD. There’s a raft of popular literature on OCD and the usual stream of medical papers. As one fine Boston practitioner has remarked to us, “I’m too busy to bother with the popular stuff and just try to stay abreast of the professional literature.” After looking through piles of it, we’ve tried to boil it down. Michael A. Jenike’s “Obsessive-Compulsive Disorder,” published in the New England Journal of Medicine, January 15, 2004, is a responsible summary of the consensus amongst the standard authorities in the field, and he personally has been on the OCD trail for decades. We would quickly follow that up with Jerome Groopman’s “The Doubting Disease,” published in the New Yorker back in April 10, 2000. Groopman looks at the disorder with some irony and places the malady in our wider social context. He cites one expert who remarks, “O.C.D. becomes as much an issue of managing load in a high-stimulus environment as it is a specific neurological disorder.” Further he at least examines the tension between drug prescribers and drug cautionaries. As best we can tell, there is no archive for OCD that is equal to the Alzheimer’s Forum, a wonderful resource for anybody seriously concerned with that disease. That site, incidentally, more or less gave birth to the fine Schizophrenia Research Forum. Other afflictions, to include OCD, need parallel resources to replace the medley of hodgepodge sites that have cropped up and that don’t assemble the key data in an organized fashion. For those who have time to meander, there’s a collection of OCD websites that has everything but the kitchen stove. Stanford does offer a short article on the history of OCD treatment that ends with the egotistical presumption that “advances in pharmacology, neuroanatomy, neurophysiology and learning theory have allowed us to reach a more therapeutically useful conceptualization of OCD.” The Count von Count. “The Count's main purpose is educating children on simple mathematical concepts, most notably counting. The Count has an obsessive love of counting (arithmomania); he will count anything and everything, regardless of size, amount, or how much annoyance he is causing the other Muppets or human cast” (Wikipedia). The Count, our favorite of all the Sesame Street notables, reminds us that repetition is key to so much learning, something that our pedagogues now choose to forget. Obsession does cause suffering, but it also powers society. P.S. We have not included comment about the part of strep in triggering OCD in some children, though there is plenty of literature on the subject. P.P.S. Researchers have generally become very politically correct as to the part nature and nurture play in mental disorders, such as autism and OCD. For them it’s all nature, and no nurture. In part this stems from the rather over-zealous excoriation of Bruno Bettelheim, the discredited Chicago autism guru who sort of blamed autism on parenting and poor mothering. After he fell from favor, everything began to be attributed to heriditary causes. At a minimum, it should be said, family environment and family compulsions provide the kind of catalyst that stirs up OCD behavior. One can usually see signals being sent out by adult family members that afflict young OCDers. Moreover, there are plenty of phenomena interwoven throughout modern society that exacerbate OCD. We are simply blinding ourselves if we ignore the part environment plays in almost all our diseases. P.P.P.S. Boston’s medical establishment would do well to remember that it is really the birthplace of Christian Science where its founder Mary Baker Eddy is buried at Mt. Auburn Cemetery. Turning her back on ordinary medicine, she believed in the healing power of the spirit. As such, she thought a transcendental mind informed all matter—and could overcome perturbations of the body. For her, drugs and chromosomes did not provide answers. Although her thinking does not hold much sway in 2008 and none other than Mark Twain thought her a charlatan, her emphasis on the spirit might bear a look in regard to mental and neurological complaints. In modern, developed societies depression is epidemic, and we are not coming to terms with it. Scientists and doctors have only come up with band aids, for that matter, for a galaxy of mental complaints. We need lines of attack that fall outside their system of beliefs. When William James got his medical education at Harvard, it cost all of $50. He probably got more for his money, as today’s graduates lack his broad vision, but, instead, run around in very small boxes, as if they had only gotten a trade school education. In short, medical education is riddled with holes. P.P.P.P.S. We have talked with some OCD sufferers who can be said to have moderate or even minor afflictions. Generally they believe that modest doses of drugs work better than behavior therapy, affording relief from symptoms until time changes their body chemistry and heals their wounds. P.P.P.P.P.S. Many sufferers have told us that they don’t quite trust doctors who have not themselves had OCD. Of course, we have only met one doctor with pronounced OCD and did not find that he was endowed with special artistry. Generally we have found psychologists, often women, offer more practical, shrewd treatment than psychiatrists. A number of them, if properly trained in an intensive psychotherapy facility, simply are more down to earth. Psychotherapists at a number of medical centers think they know a great deal about the disease. They usually do not. P.P.P.P.P.P.S. We would caution readers that the names we give to mental difficulties are merely labels which in themselves misrepresent the nature of mental and nervous disorders. What one finds in working with schizoids, manic depressives, autistics, OCDers, dyslexics, etc is that each patient has a confusing and custom mixture of problems—not just one thing. Bulemics and anorexia sufferers have a fair patch of OCD, and so it goes. That each of the afflicted has a mixture of so-called diseases suggests that disease theory is not an entirely useful way of looking at nervous system disorders. In much the same way, we discover from biopsies that cancer patients don’t seem to have one type of cancer, but are often afflicted with a mix. |
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