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Thursday, July 10, 2003Every age has its vague illnesses that defy the limits of medical knowledge. In the 19th century, there was neurasthenia, today there’s chronic fatigue syndrome. The problem with such illnesses is that they aren’t so much defined diseases with observable cellular pathology or measureable metabolic abnormalities as they are descriptive terms for a constellation of symptoms that appear together in some people. As medical knowlege improves, some people who would once have been lumped into those vague diagnoses get removed. For example, it isn’t hard to imagine that many a person with multiple sclerosis was once considered neurasthenic. And that’s the problem with chronic fatigue syndrome, and why many doctors are reluctant to embrace it as a single pathology. Both the New Yorker article and the Diane Rehm interview spend a lot of time criticizing doctors for not recognizing Laura Hillenbrand’s disease. The interview even includes her current internist who does his share of clucking over the stupidity of other doctors. Several different doctors told her they could find nothing physically wrong and that they felt she was suffering from severe depression. She only saw one psychiatrist, however, and he told her she wasn’t depressed. Curiously, she didn’t bother getting a second opinion on that one, although her internist at the time suggested she do just that. She sought second, third, fourth, and fifth opinions from internists, though. And kept getting other opinions until she found one she liked. Search long enough, and you’ll find someone who agrees with you. And to be fair to them, her doctors weren’t necessarily negligent. The time was the late 1980’s when chronic fatigue syndrome was just beginning to be defined. And if she presented her story to them the way she presented it in the New Yorker article, it’s hard to blame them for suspecting psychiatric problems. You see, the whole thing started when a car she was riding in one dark night almost hit a deer, and then a meteor flashed across the sky. She was the only one in the car who saw the deer and the meteor, and almost immediately, she became ill. What followed sounds a lot like infectious mononucleosis. A fever, sore throat, and fatigue. She had strep throat, too, which often coexists with infectious mono for some reason. But she never got better. She spent the next sixteen years incapacitated by fatigue and lethargy, and occasional sore throats and swollen glands. She has nothing but scorn, though, for the doctor who told her she was suffering from Epstein-Barr virus, the virus that causes mono. Which is too bad, because he was probably the closest to the truth about her condition in its early days. Later on, there does seem to be a component of psychological interplay in her disease. She has a relapse, for example, when she and her boyfriend have to drive through a severe thunderstorm to visit friends. She doesn’t want to go, he wants to press on. She gets sick. For months. So sick that she has to be spoon fed. Talk about secondary gain. The boyfriend not only misses out on something he wants to do, he gets punished for a long time afterwards for his stuborness. And she gets unlimited attention and love. That’s not to say that Laura Hillenbrand doesn’t have a real disease. She very well might. Just one that we can’t diagnose yet. Nor treat. But it isn’t far-fetched to think that she might also have some depression or anxiety thrown in, too. Here’s the current thinking on chronic fatigue syndrome (CFS): It is known that CFS is a heterogeneous disorder possibly involving an interaction of biologic systems. Similarities with fibromyalgia exist and concomitant illnesses include irritable bowel syndrome, depression, and headaches. Therefore, treatment of CFS may be variable and should be tailored to each patient. Therapy should include exercise, diet, good sleep hygiene, antidepressants, and other medications, depending on the patient's presentation. All of those concomitant illnesses have strong emotional underpinnings. Irritable bowel and fibromyalgia get worse with emotional stress. So do headaches, as we all know. Ms. Hillenbrand’s much-castigated doctors weren’t so far off base in their diagnoses. What they lacked was sufficient sympathy, and the ability to give her condition a name that she found acceptable. One that, unlike depression, was from the outside, not the inside. For it wasn’t until she found a doctor who called her disease chronic fatigue syndrome, admitted he’d never be able to cure her, and most importantly, acknowledged that she was suffering that she began to see improvement. She got validation without stigmatization. And there’s nothing wrong with that. It’s a valid treatment approach, and one that works. But, to suggest, as Ms. Hillenbrand’s internist does in the Diane Rehm interview that this is a definitive disease and to express suprise, as he does, that there are doctors who are skeptical about it is nothing more than self-serving posturing. At one point, Diane Rehm asked him, with much expectation in her voice, if he was taking new chronic fatigue patients since this was obviously an area in which he had some expertise. He didn’t say it outright, but his voice had an underlying “Good-God-no” tone to it when he told her his practice was closed to new chronic fatigue patients. Five percent of his patients have the illness. They take up too much time. Too much paperwork. Specifically, too many disability forms to fill out. Hard to imagine an oncologist closing his practice to cancer patients because of the disability forms. Or a nephrologist closing his practice to chronic renal failure patients for the same reason. Or an endocrinologist to his end-stage diabetic patients. Or a cardiologist...well you get the idea. It isn’t the forms, it’s the nebulous disease he’s being asked to certify as disabling that’s the problem. In his heart, he knows there’s more to it than meets the eye. UPDATE: There's a very good piece on the doctor's perspective of this sort of illness in JAMA, this week, but unfortunately, it's only available to subscribers. It's written by a neurologist who has been in practice for thirty years: I have traveled this road many times and always have the same reaction. Odd as it may seem, I feel more comfortable and better equipped to advise and care for patients with ALS or other neuromuscular maladies than I am to provide consultation and ongoing care to patients like Linda. That sobering reality has always bothered me. Over the years I've learned that almost every aspect of our health care system is more responsive to the needs of patients with major organ failure. We miss the mark for those who fear they have a serious yet undiagnosed disease and who have unexplained pain, weakness, fatigue, headaches, mood changes, or interrupted sleep. These patients do not "fit" one neat diagnosis - some have organic illness - but most have somatic symptoms without an underlying disease explanation. To the extenet that they cannot function, they are truly disabled. To make matters worse, physicians don't want to take care of these people, and insurance companies don't want to pay for their care. ...One of my colleagues once rather sheepishly admitted to me, "Even when I try to help these patients, I usually fail, so I've given up trying.".... ....Even with years of experience and good communication skills, I felt a return of butterflies as I entered Linda's examination room, determined to give it my best shot. And he's someone who has spent years perfecting the art of medicine. For that's what dealing with the unknown illnesses comes down to - an art. posted by Sydney on 7/10/2003 01:23:00 PM 0 comments 0 Comments: |
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