Medicine isn’t science — nor should it be
Posted by Henry Bauer on 2010/12/26
My graduate-studies mentor was Bruno Breyer, PhD (Bonn), MD (Padua). He carried on clinical research at a hospital as well as unrelated scientific research at the university. Quite often he would sigh, “The trouble with doctors is that they’re not scientists”.
He was talking about research, of course, not about the practice of medicine. Medical practice is fundamentally different from science: its focus is the individual, whereas science deals with universal laws, principles, theories.
Admittedly, medical practice can be informed by scientific knowledge; but it can equally be misled by mistaken scientific views. AIDS and HIV are exemplary in this respect — exemplary in the sense of representative, for there are ample other instances. Before the “HIV” era, AIDS patients were treated as individuals suffering from specific infections, and treated in some cases very successfully, as with Michael Callen who lived more than a dozen years after having been at death’s door. Following the adoption of the mistaken scientific belief that “HIV” was the cause of AIDS, medical practice has increasingly made antiretroviral treatment routine instead of treating individual patients according to their manifest individual ailments.
Modern medical practice is increasingly infected by a misguided, purportedly “scientific” mind-set. I’ve mentioned before how sicknesses and their treatments have been “scientifically” created and sold (Selling sickness and huckstering medications). I’ve just started reading Jeremy Greene’s fascinating account (Prescribing by Numbers — Drugs and the Definition of Disease, Johns Hopkins University Press, 2007) of how medical practice has become increasingly independent of clinical symptoms and diagnosis and increasingly dependent on “scientific” markers, so that heart disease is diagnosed by cholesterol level and not by chest pain, and hypertension is declared solely on the basis of pressures, moreover pressures that are perfectly normal for large numbers of people.
The present essay springs from a recent series of articles about chronic Lyme disease (“Lost in the Woods”: Salvos launched in Lyme debate; In search of hope, facts; The doctor of last resort), which afflicts some unknown number of individuals but is said by official medicine not to exist. The established view is that Lyme disease, caused by a spirochetes bacterium (Borrelia burgdorferi) transmitted to humans from deer ticks, consists of an acute infection that is satisfactorily treated by a few weeks of the oral antibiotic, doxycycline. The Centers for Disease Control and Prevention (CDC) call for treating acute Lyme disease with a regimen of 14 to 28 days, and another 28-day course if that doesn’t do the job.
“Most doctors, citing guidelines issued by the Infectious Diseases Society of America, believe nearly all cases of Lyme are acute, with the exception of a very small number of patients who have post-Lyme inflammatory illness. They take the position that chronic Lyme disease doesn’t exist; that short-term antibiotics decimate the spirochetes in all but the rarest of cases”. And those doctors respond to queries about chronic Lyme disease with “copies of The New England Journal of Medicine, talk about ‘evidence-based medicine’ and [they] say the crux of chronic Lyme isn’t Borrelia but rather the vagaries and vicissitudes of middle-aged, middle-class life”.
A minority of doctors (some 20%), though, have not pooh-poohed what their patients experience and what they observe in the way of symptoms: “an acute case of Lyme can develop into a crippling, chronic version of the disease that attacks the body and the brain, they believe. . . . They liken the naysayers to those who first labeled multiple sclerosis the ‘faker’s disease’”.
Those who are convinced that they suffer from chronic Lyme have campaigned to make long-term treatment permissible, successfully so in several states that have legislated protection for doctors who decide that their patients require such care.
How unscientific official practices are, how not evidence-based, is illustrated by the manner in which the CDC and State Departments of Health acquire — or, rather, do not acquire — knowledge about infectious diseases: There exist no regulations to require primary-care physicians, or specialists, or clinical laboratories, or hospitals to report instances of Lyme disease. As a result, it is almost a matter of chance, whether or when officialdom receives enough data to make possible an informed estimate of how common or rare it is and what physicians ought to know and do about it. That in itself ought to suffice to discount the arrogant certainty with which some authorities currently dispute the existence of a chronic form of Lyme disease.
Yet dismissive comments about individuals imagining their symptoms are not uncommon: “‘I think chronic Lyme seems to be an idea that’s infectious’, said Dr. Stephanie Nagy-Agren of the Veterans Affairs Medical Center in Salem”; and “the Infectious Diseases Society of America . . . says there’s no evidence to prove it exists”. . . . “Dr. Thomas Kerkering, . . . . infectious diseases section chief . . . has spent much of the past decade ‘de-mything’ chronic Lyme, which he likens to chronic fatigue syndrome and fibromyalgia before it. He lumps the three into disease ‘catch-alls’, faux ailments designed to give a name to the stresses of daily living. . . . ‘Those of us who stick to the scientific evidence are pilloried’”. “Anecdote squared does not equal data”, Kerkering likes to say.
Kerkering proclaims himself to be an advocate of “‘evidence-based medicine’, the concept of applying the most scientifically sound research to clinical decision-making”. He treats acute Lyme disease only if the CDC-approved blood test is positive. Whereas another hospital in the same area reports seeing 25-30 cases of Lyme, Kerkering’s team has confirmed only 4 cases out of 50 suspected ones.
Kerkering happens to be fundamentally wrong about what evidence-based medicine is. That phrase has become a sound-bite wielded by those of Kerkering’s ilk who wish to emphasize how authoritative their views are, when in point of fact the push for evidence-based medicine was launched in the 1990s because so little of medical practice is actually based on evidence. And that has hardly changed in the meantime; see, for instance, Carey, “Medical guesswork — from heart surgery to prostate care, the health industry knows little about which common treatments really work”, Business Week, 29 May 2006; and for a comprehensive overview, see Centre for Evidence-Based Medicine.
It could not be otherwise, because scientific experiments cannot be carried out on human beings, and so it is a long, slow, uncertain process to gather and weigh the evidence as it accumulates fitfully, unsystematically, from the actual experiences of individuals and their individual doctors. The history of medicine is actually the history of placebo; there were no “scientifically sound” treatments before aspirin, sulfa drugs, and antibiotics (Shapiro & Shapiro, The Powerful Placebo — From Ancient Priest to Modern Physician, Johns Hopkins University Press, 1997). Moreover aspirin was “discovered” because of its presence in folk remedies used since times immemorial, and modern “scientific” drug development remains a matter of trials and errors, still often guided by folk traditions of medicinal plants.
It is the chronic sufferers and the maverick doctors who treat them who are practicing evidence-based medicine. The evidence that should count is what a patient experiences, not the generalizations that officialdom promulgates on the basis of inadequate data. In medicine, it is precisely anecdotes that count, the stories we tell our doctors when we consult them, the very reasons why we consult them.
Kerkering cites the strength of the placebo effect, and that by converse (nocebo, psychosomatic illness) people can talk themselves into being ill when they are actually experiencing nothing more than the stresses of everyday life. Absolutely correct. But were Kerkering to practice what he preaches, were he being truly scientific, then he would test his diagnosis of “talking themselves into it” by listening to what they say, telling them he knows what the problem is, and giving them the remedy that will have them cured in a week or two — not telling them that this remedy is a placebo:
— If they come back uncured, he would then have to change his diagnosis.
— If they are cured by the placebo, then Kerkering would have done what a doctor is supposed to do: Heal his patients, even if — or perhaps especially if — it’s “all in their minds”.
Officialdom’s acknowledgement, that “in the rarest cases” the short-course antibiotic doesn’t eliminate the spirochetes and that “a very small number” of patients suffer “post-Lyme inflammatory illness”, is tantamount to admitting the reality of chronic Borrelia-caused disease. Beyond that, it is not clear to this lay person why it should seem impossible that a spirochetes infection might sometimes go undiagnosed for too long and then cause a variety of symptoms including mental confusion; after all, that’s the case with spirochetes-caused syphilis: if it isn’t diagnosed and successfully treated soon after infection, in its secondary and tertiary stages it does precisely the things that chronic Lyme disease is held responsible for by those who suffer from it and the maverick physicians who practice evidence-based medicine with them.