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Dr. Lowe How to Prepare Patient-to-Patient Fibromyalgia Research Foundation
The Metabolic Treatment |
Dear Dr. Allinson: At the same time, however, I must point out and correct three factual errors in your review. Also, I must comment on a statement you made with which (in slightly modified form) I'm compelled to agree—but with deepest regret for the tragic implications for fibromyalgia patients in the UK. (1) Regular Blood Tests to Monitor Therapy. You wrote: "Unfortunately, trips to his clinic in Tulsa don't come cheap. Due to the nature of thyroid supplementation, regular blood tests are required to monitor therapy and any improvement." Trips from the United Kingdom to our Center for Metabolic Health (now in Boulder, Colorado) are expensive. The main expenses are the cost of travel, lodging, and the patient’s time away from employment. However, our patients have no expense whatever from "regular blood tests . . . required to monitor therapy and improvement." We do initially establish a patient’s thyroid status by lab testing. But most of our patients from the United Kingdom bring their lab test results with them, which your National Health Service apparently provides for no out-of-pocket cost to them. After establishing a patient’s initial thyroid status, we do not (except when rarely necessary) use further thyroid function testing. That we don’t use thyroid test results to guide clinical decisions is a major reason that 85% of our patients fully recover from their fibromyalgia symptoms. As you know, most conventional doctors base their decisions about thyroid hormone therapy on lab test results, especially TSH levels. This is a major reason why so many doctors in the UK fail to help their fibromyalgia patients. Their clinical failure creates the necessity for patients in the UK to work with us in the US to recover through our more effective clinical approach. (2) Treatment with Thyroxine. You implied in your review that we advise doctors to treat patients with T4 (thyroxine). This is patently false. We’ve widely publicized that T4 alone is the least effective thyroid hormone preparation. We've spent many years comparing the safety and effectiveness of the different thyroid hormone preparations—T4 alone, T4/T3 combinations, and T3 alone. Based on the outcome of those comparisons, we can no longer morally justify restricting patients to the use of T4 alone. Some patients respond well to it, but most don’t. And many patients don’t benefit from it at all. If, theoretically, doctors wanted to keep most hypothyroid patients sick, they could do so merely by restricting them to T4 alone. Of course, most doctors want to get their patients well; nonetheless, they unwittingly keep many sick by restricting them to T4. (3) My "Anecdotal" Conclusions. Referring to me, you wrote, "most of his conclusions are anecdotal." Here you’ve made the same flagrant error recently made by two other doctors in the United States. I provided a detailed rebuttal to their erroneous description of our work as "anecdotal." In the interest of intellectual accuracy, I trust that you’ll read my rebuttal to them. Nonetheless, I explain in the following several paragraphs why your characterization of our conclusions is incorrect. You will better understand how our conclusions differ from anecdotal ones by reviewing how the typical dictionary defines "anecdotal." According to the Random House Webster’s Unabridged Dictionary, anecdotal means, "Based on personal observation, case study reports, or random investigations rather than systematic scientific evaluation." (Italics mine.) With this definition in mind—especially the phrase I’ve italicized—consider my description in the next several paragraphs of how my colleagues and I arrived at our present conclusions. In the late 1980s and early 1990s, my conclusions about fibromyalgia, its underlying causes, and its appropriate treatment were highly tentative; they arose—as do all scientific hypotheses—as seemingly plausible conjectures.[14][15][16] Having arisen in my mind from clinical observations, my instinct was to reject their veracity and to try to prove the conjectures false. Driven by the conviction that I must be wrong, I scrupulously searched through available scientific knowledge for evidence that contradicted my conjectures. After exhaustive quests repeatedly carried out over several years, I was forced to a conclusion: My conjectures successfully stood up to every attempt I made to refute them. This conclusion (that my conjectures about the cause(s) of fibromyalgia were probably correct) was reinforced by ongoing clinical experiences: My medical colleagues and I were treating fibromyalgia patients with metabolic therapy based on my conjectures about the cause(s) of fibromyalgia. Our treatment protocol at that time was comparatively unpolished. Despite that, we were getting enough patients well so that we knew we understood the underlying mechanisms of at least some patients’ fibromyalgia symptoms. Based on these experiences, I decided that my colleagues and I must do systematic scientific studies to accurately determine why our patients were improving or recovering. Were they improving or recovering because of my enthusiasm from a delusional belief that I was right? Or was I in fact correct? My colleagues and I were forging a new line of investigation. Our aims were to learn whether fibromyalgia was caused by impaired tissue metabolism and to determine whether patients measurably improved with metabolic treatment centered around the use of thyroid hormone. Like scientists in most new lines of research, we had to learn how best to conduct our studies. To do so, we had to start with open clinical trials—open, yet highly systematic. We were rigorously systematic in these open trials for a simple reason: I knew no other way to conduct scientific studies, having been educated and trained in research-oriented behavioral psychology—a field so uncompromisingly systematic in its scientific protocols that by comparison, most clinical research in medicine is slipshod, sloppy, and of doubtful value. Hence, our initial open trials, although open, weren’t mere "personal observation" or "random investigations." Instead, they were Spartanly systematic.[1][2][3][4] Only those naive about research methodology and the nature of objective data would label as anecdotal our tentative conclusions from those trials. We conducted two studies of the thyroid status of fibromyalgia patients. Our conclusions from those studies were based on retrospective analyses of patients’ thyroid status at initial clinical intake.[6][7] The conclusions were not based on random investigation or personal observation. They were based on statistical analyses of laboratory test results of unselected patients as they sequentially came into our clinics. Three of our clinical trials were double-blind, placebo-controlled, cross-over studies.[8][9][10] We conducted these studies with researchers at Baylor University Medical School and the University of Texas Health Science Center.[8][9] The research methodologist, statistician, and clinical researcher at these institutions who participated would strongly object to a critic characterizing as anecdotal our conclusions from these studies. We also conducted a case-control 1-to-5 year follow-up study. We compared 20 fibromyalgia patients who had gone through our metabolic rehabilitation with 20 scrupulously-matched control fibromyalgia patients.[5] The protocol we used in this study was, again, rigorously systematic. To say our conclusions from this study are anecdotally-derived is like saying formal decisions of the U.S. Supreme Court are based on petty back-porch gossip. We wrote a paper in which we hypothesized that fibromyalgia patients whose thyroid test results are normal have mutations in the c-erbA-ß gene (the gene that codes for the beta thyroid hormone receptor).[11] The paper was published in the world’s most respected peer-reviewed, indexed journal on theoretical medical science. One may sincerely believe that our tentative, theoretical conclusion in that paper is anecdotal. But that belief would reflect ignorance of a crucial requirement for the advancement of scientific knowledge—exacting logic-derived hypothesizing based on the available bank of scientific data. The same ignorance would be obvious if the critic described as anecdotal our conclusion in another of our publications. The paper contains a logical analysis of the available evidence pointing to a 90% incidence of thyroid disease among fibromyalgia patients. The paper was peer-reviewed by two French thyroidologists and France’s foremost rheumatology fibromyalgia researcher, Prof. J.B. Eisinger. The paper was further critiqued by scientists at separate meetings in Grenoble and Toulon, France.[12] Finally, it was published in France’s major peer-reviewed, indexed rheumatology journal devoted to fibromyalgia.[13] For our conclusion in that paper to survive such scrutiny and end up printed in that journal makes it virtually outside the realm of possibility that the conclusion is a mere offhanded anecdote. Based on the content of the foregoing paragraphs, I must—as you perhaps understand—vigorously refute your describing our conclusions as anecdotal. Your description is grossly inaccurate. It trivializes the years of logical and scientific work of my research team—work continued by means of great sacrifice, and with strict adherence to a self-imposed standard of scientific excellence. If I accomplish nothing more with this reply to your review, it must be this: to emphatically clarify that our conclusions, far from being anecdotal, are as logically sound and scientifically grounded as any current conclusions within medical science. General Practitioners' Compliance With the Dictates of Endocrinologists. Most mainstream medical doctors aren’t privy to the fact that our conclusions about fibromyalgia and thyroid hormone therapy are logically and scientifically based. The reason is simple: Most major medical journals use conventional endocrinologists to review and pass judgment on submitted research reports that deal with thyroid hormone therapy. These reviewers are members of a tightly closed group; with rare exception, unless a dissenting opinion comes from an inside member of that group, the opinion—no matter how scientifically credible—bounces off closed ears. The reviewers seem to think, "Study results that contradict cherished beliefs of our endocrinology specialty couldn’t possibly be correct! And no report containing such contradictions deserves to be published." Such prejudicial and irrational thinking by members of that closed group has blocked publication of research findings such as ours in major journals. Moreover, members of the endocrinology specialty have refused to participate in conferences and openly discuss differences in their beliefs and ours. Essentially, they’ve refused to consider science-based dissenting views and to engage in open and fair debate with credible researchers whose findings contradict some of their beliefs. Their conduct in this matter is clearly outside the boundaries of legitimate science, and it is clearly within the realm of bigotry, dogma, and pseudo-science. In view of my opinion of the unscientific conduct of the endocrinology specialty, I must address another statement of yours. "I cannot imagine," you wrote, "that any British G.P.s would be happy prescribing thyroxine to someone with normal thyroid function test results" (Italics mine). The fact is that some British G.P.s do admirably treat some patients with thyroid hormone despite what you incorrectly call "normal" thyroid test results. So I can't agree with your absolutistic statement about "any British G.P.s." But when rephrased to more accurately say "most British G.P.s, I’m afraid you are quite correct—tragically so! One reason you’re correct is that, as Prof. Linus Pauling said, "Of all the professions, the medical profession is the one in which the individual practitioners do the smallest amount of thinking for themselves."[17] Instead, conventional physicians accept without question most any pronouncement (despite clear evidence of its absurdity) from those they consider authorities in specialties other than their own. General practitioners who permit the endocrinology specialty to think for them absorb into their belief systems several false conclusions about thyroid hormone therapy—conclusions based on almost incomprehensibly bad science and huge financial incentives from corporations that market thyroxine and TSH assays; conclusions that keep millions of patients sick and end the lives of many prematurely. The misery and ruined lives of these patients, and the avoidable early deaths, could come to a halt—if only general practitioners would resume thinking for themselves as they probably did before entering the medical profession. I understand, of course, the two main reasons that most physicians do so little thinking for themselves. The first reason is understandable and justifies sympathy toward the physicians. As I pointed out in 1998 at the University of Texas Health Science Center, we doctors are now deluged with new scientific information. Keeping up with even a thin sliver of it is a burden. Because of this, we often must depend on the opinions of other doctors who, presumably, keep up on new information in their specialties. The second reason doctors generally don’t think for themselves is also understandable. Despite being understandable, this reason justifies the contempt in which millions of patients now hold mainstream medical doctors. Regarding patients’ needs for safe and effective thyroid hormone therapy, most general practitioners comply without question with the dictates of the endocrinology specialty. A major reason general practitioners comply is their fear of power politics. Violate the endocrinology specialty’s mandates for the diagnosis and treatment of hypothyroid patients, and regulatory agencies (such as the UK's General Medical Council) may impose Draconian punishment—as in the cases of Dr. Barry Peatfield and Dr. David Derry. The threat of these agencies punitive actions—usually prompted by the endocrinology specialty—intimidates general practitioners into obsequent compliance. And this thuggery-induced compliance serves well the financially lucrative relationship between the endocrinology specialty and its corporate bedfellows. I firmly believe that for the endocrinology specialty, science—and bad science at that—serves as little more than a pretense for imposing the specialty's false beliefs on the public and other doctors in the service of power and profit. And mainstream medical doctors, largely unwittingly, abet this diabolical enterprise. They do so by failing to effectively use the cortical gray matter with which most are well-endowed, which otherwise would lead them to defy the endocrinology specialty's mandates that are derived from its lucrative but false beliefs about thyroid hormone therapy. Regrettably, then, but for reasons different from your own, I concur with your rephrased statement, "I cannot imagine that [most] British G.P.s would be happy prescribing thyroxine to someone with normal thyroid function test results." Conclusion. As I said at the outset, I appreciate your having written a review of my research team’s work and The Metabolic Treatment of Fibromyalgia. The book is, of course, huge, and I applaud you for taking on the formidable task of reading enough of it to report its contents to your readers. I sincerely hope you find it in no way disquieting for me to note and correct the three factual errors in your report. (Similarly, I hope you take no offense at my reason for agreeing with your opinion that most British general practitioners won't "be happy prescribing thyroxine to someone with normal thyroid function test results.") The book’s size will inevitably compel some reviewers to minimize their toil by presuming rather than verifying some views I expressed in the book, and I sympathize with this. I hope in turn, however, that those reviewers, yourself included, can sympathize with the necessity of my correcting resulting errors that may turn up in their reviews. References
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