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Dr. Lowe How to Prepare Patient-to-Patient Fibromyalgia Research Foundation
The Metabolic Treatment
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June 3, 2005 In your article on breathing problems, you wrote about a study in which T3 effectively relieved the asthma symptoms of children. After some kids started using T3, they were able to stop their asthma medications. After I read this in your article, I took a copy to the endocrinologist. I asked him to let me try T3 to see if it would relieve the air hunger. He glanced at the article and then threw it back across his desk to me. He spouted out that breathing problems have nothing to do with hypothyroidism. He also said that if hypothyroidism had caused my air hunger, the levothyroxine (T4) he’d prescribed would’ve relieved it. I pushed your article back across his desk and pointed to the list of studies you quoted in the article. "These are scientific studies," I said. "They prove that some hypothyroid patients have breathing problems, and that T3 instead of T4 may relieve the problems." He pushed the article back without looking at it and said, "You can find any nonsense you want on the Internet." I told him that if he couldn’t intelligently comment on the scientific studies that contradict what he says, then he’s unscientific. He was stunned and sat speechless. I asked if he was going to read the studies you listed. His face turned so red that I got scared, but I was angry, too. I told him that I hold my doctors to a higher standard of intelligence and that he was fired. I walked out and won’t return. My husband was upset about what I’d done. He said that I missed the chance to educate the endocrinologist. I disagree. I don’t believe the endocrinologist was open to learning. My husband and I have argued about this, and I’d really appreciate knowing what you think. Do you think I should have handled the situation differently? Dr. Lowe: Your question reminds me of the wide-ranging advice people have given me on how best to handle endocrinologists such as the one you describe. Some have advised me, "Pretend that their authority humbles you, and then subtly lure them to the truth so they think they discovered it." Others have advised, "Hit ‘em hard right between the eyes with the scientific truth." As a reformer, I generally take a polite but firm stance based on plausible scientific evidence. My goal of reforming some of the practices of endocrinologists, however, is long range. So, I often have the luxury of adapting my approach to varying circumstances. But you don’t have that time-permitting luxury. Your breathing problem is of immediate concern, and the disorder the endocrinologist is treating you for is possibly the cause of the problem. In view of this, it was entirely proper that you insisted he intelligently discuss the problem with you. And it was proper that you fired him for refusing to do so. You also gave him a list of studies that verify that hypothyroidism is often the cause of breathing problems. The studies aren’t "nonsense" from the Internet, as he implied; they are reports by reputable researchers published in credible scientific journals. Therefore, he was obliged to sensibly discuss the issue with you. Some case law, in fact, bears directly on this subject: if a doctor is going to give an opinion on a medical topic, he has a professional responsibility to be aware of the scientific status of that topic. Apparently, the endocrinologist failed in that responsibility. Some endocrinologists are caring, courteous, rational individuals. The one you were dealing with—at least in the interaction you described—wasn’t. Instead, he was ignorant of the issue at hand, dogmatic, and close-minded. With due respects to your husband’s opinion, trying to re-educate a doctor of that ilk is usually a waste of time. Philosopher Bertrand Russell wrote, "So long as men are not trained to withhold judgment in the absence of evidence, they will be led astray by cocksure prophets, and it is likely that their leaders will be either ignorant fanatics or dishonest charlatans." [1] Your endocrinologist apparently fails to withhold judgment in the absence of evidence. And, as Russell implied, his beliefs are likely to be shaped by leaders who are no more intellectually responsible than he. Your challenging and firing him, then, seems to me a prudent act of self-preservation.I believe you employed what is the single best approach for patients to deal with an arrogant, dogmatic, and authoritarian doctor in any specialty. That approach is to demand that the doctor account rationally for scientific evidence that contradicts his beliefs; and if he doesn’t comply, summarily dismiss him as unscientific and thereby an unworthy member of one’s health care team. In short, you handled the situation in exemplary fashion, and I believe that other patients who follow your example will benefit immensely. Reference November
4, 2003 Dr. Lowe: I appreciate your interest in fibromyalgia research. I regret to say, however, that I’m not aware of any research teams in your area that I could enthusiastically refer you to. Our research team, on the other hand, is about to begin metabolic studies of fibromyalgia patients compared to healthy controls. We’ll be using indirect calorimetry (for measuring oxygen intake and calculating the metabolic rate) and many other measures, such as body composition. We’ll then use regression statistics to learn what metabolism-influencing factors account for differences we find between the patients and control subjects. If you lived in the Boulder/Denver area, we’d welcome your direct help in conducting the actual studies, perhaps in taking measurements of patients and control subjects. But since you live on the East Coast, taking part in this way may be impossible for you. There are other ways you might take part, however, that could be educationally enriching. I’ll mention two ways you might consider. One is helping us collect copies of the journal papers we must obtain while planning and designing studies. Our research coordinator, Jane Jones, RN, and I have already collected many papers for the first of our upcoming metabolic studies, but no end ever comes to this essential task. For a student, helping in this way isn’t a mere menial task. Most veteran researchers find themselves doing some—occasionally all—of this leg work. But for a student, performing it can be invaluable in developing the habit of scholarship; until all journals and books are available electronically, the leg work of library research will remain essential to acquiring a thorough knowledge of the subject under study. Acquiring this knowledge is an indispensable step in the scholarship that underlies good scientific work. Because of this, the leg work and a willingness to do it are also essential parts of scholarship. The other way you might help is to scrutinize the content of the papers you collect, giving extreme and critical attention to every detail that may be related to our upcoming studies. By studying the papers’ content, you would expand your own knowledge. At the same time, as a distance member of the research team, you could contribute to our knowledge base; the more minds we have on the team cogitating on and culling information related to our studies, the better the outcomes of our studies are likely to be. I appreciate, of course, that the demands of your medical school studies could make participation in this way an extreme challenge for you. I hope my comments are helpful, and I look forward to hearing from you.
May
24, 2001
Dr. Lowe: In clinical research, there is no universal number of patients researchers must include for study results to be credible. In some studies, many patients are needed; in others, few are required. For each individual study, researchers must carefully calculate (as we've always done) the number of patients required. The purpose is statistical; we must know how many patients are needed so that statistical tests will show differences (if there are any) between the results of the treatment and placebo groups. If the effect of the tested treatment is weak, researchers must include more patients for statistical tests to detect a difference. The weaker the therapeutic effect, the larger the number of patients needed. If the therapeutic effect is strong, however, fewer patients are required. Some treatments are so powerful that only a single patient (used in a special study design) is needed for statistics to detect the therapeutic effect. It is meaningless, then, to praise or denounce a study merely because of the number of patients included. To do so is to ignore the importance of several factors that interact to necessitate more or fewer patients in the study. Even with small numbers of patients in some of our studies, statistical tests showed that the effects of the metabolic treatment were extremely powerful. Using more patients in the studies would have only confirmed the powerful effects. Our research funds have been meager. Expecting that the therapeutic effects of the treatment would be strong, we used a high-quality study design that would show the effects of the treatment with the smallest possible numbers of patients. As a medical researcher, your brother-in-law should appreciate the prudence of our frugality. Even more important, your brother-in-law should appreciate another point, as any well-trained medical researcher should. Statistical tests of our study results showed something remarkable: on some measures of patient status, the probability that the differences between the treatment and placebo groups were due to chance was one in 10,000! To put this number in perspective, the differences between the groups would’ve been considered statistically significant if the tests had shown that the probability was only five in 100. The significance levels reached with the small number of patients show that the therapeutic effects of the treatment were extraordinarily powerful. Hence, the small number of patients is not a weakness of the studies—it is in fact a strength! Only one thing is more noteworthy to me than the exceptional statistical significance levels reached in these studies—the fact that experienced medical researchers and journal editors failed to understand or acknowledge what these results mean. I would ask your brother-in-law several questions. Why it is acceptable for NASA scientists to send one man, John Glenn, into space to study the effects of space flight on the elderly? Why is it acceptable for drug companies to use single patients in studies of the dose-response curves of drugs? Why is it acceptable that a powerful technology called "behavior modification" was developed largely through studies involving single patients or few patients? And, in view of these other acceptable uses of single or small numbers of patients, why is it not acceptable that in some of our studies, we used the same approach? The answer is that our use of the same approach is perfectly acceptable scientifically. Politically and psychologically, though, it isn’t. Over the years, I’ve learned that most of our detractors—especially endocrinologists—don’t respond with forethought to our studies and treatment approach. Instead, they react emotionally, reflexly declaring that we must be wrong. After all, our views differ from what their authority figures taught them. The detractors don’t bother to objectively assess the evidence for our views; rather, they quickly go to work trying to justify their reflex denouncements of our views. While they’re at it, they look about for any excuse to say we’re wrong. Lacking good excuses, they swiftly stoop to using flimsy ones. Among them is the charge that we used too few patients in some of our studies. In fairness, I can’t say with certainty that your brother-in-law’s criticism of our studies was emotionally or politically driven. Maybe he just isn’t familiar with what dictates the number of patients required in clinical trials. This is a matter, however, that is crucial for medical researchers to understand, and I’ll be happy to discuss it with him. Most likely, he has books in his own library on statistics and research methods that furnish better explanations than I can give him. After he’s had time to read the explanations, I trust that he’ll retract his initial criticism of our studies. As a devout critical rationalist, I’ll sincerely welcome any thoughtful criticisms he has of the studies. |
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