Bohr T W
Department of Neurology, Loma Linda University School of Medicine, California, USA.
Neurol Clin. 1995 May;13(2):365-84.
"It is in the healing business that the temptations of junk science are the strongest and the controls against it the weakest." Despite their subjective nature, these syndromes (particularly MPS) have little reliability and validity, and advocates paint them as "objective." Despite a legacy of poor-quality science, enthusiasts continue to cite small, methodologically flawed studies purporting to show biologic variables for these syndromes. Despite a wealth of traditional pain research, disciples continue to ignore the placebo effect, demonstrating a therapeutic hubris despite studies showing a dismal natural history for FS. In reviewing the literature on MPS and FS, F.M.R. Walshe's sage words come to mind that the advocates of these syndromes are "better armed with technique than with judgment." A sympathic observer might claim that labeling patients with monikers of nondiseases such as FS and MPS may not be such a bad thing. After all, there is still a stigma for psychiatric disease in our society, and even telling a sufferer that this plays only a partial role may put that patient on the defensive. Labeling may have iatrogenic consequences, however, particularly in the setting of the work place. Furthermore, review of a typical support group newsletter gives ipso facto proof of this noxious potential. The author of a flyer stuffed inside the newsletter complains that getting social security and disability benefits for "the invisible disability" can be "an uphill battle. But don't loose (sic) hope." Apparently the "seriousness of the condition" is not appreciated by the medical community at large, and "clinician bias may well be the largest threat," according to Boston epidemiologist Dr. John Mason. Sufferers are urged to trek to their local medical library and pull four particular articles claiming FS patients have more "stress," "daily hassles," and difficulty working compared with arthritis patients. If articles can't be located, patients are told to ask their lawyers for help. Although "Chronic Fatigue Syndrome" and FS are not considered by everyone to be the same malady, the "National Institute of Health (sic) has lumped these two conditions together. This could work in your favor." (A U.S. political advocacy packet is available for $8, but a list of U.S. senators with Washington, DC addresses is freely provided.) These persons see themselves as victims worthy of a star appearance on the Oprah Winfrey show. A sense of bitterness emerges; one literally bed-bound Texas homemaker writes in Parents magazine that "Some doctors may give up and tell you that you are a hypochondriac."(ABSTRACT TRUNCATED AT 400 WORDS)
“在治疗行业中,伪科学的诱惑最为强烈,而抵制它的控制措施最为薄弱。”尽管这些综合征(尤其是肌筋膜疼痛综合征)具有主观性,但可靠性和有效性却很低,而其倡导者却将它们描绘成“客观的”。尽管存在大量质量不佳的科学研究,但热衷者仍继续引用一些规模小、方法有缺陷的研究,这些研究声称显示了这些综合征的生物学变量。尽管有大量传统的疼痛研究,但追随者仍继续忽视安慰剂效应,尽管有研究表明纤维肌痛的自然病程不佳,但他们仍表现出治疗上的傲慢。在回顾关于肌筋膜疼痛综合征和纤维肌痛的文献时,F.M.R. 沃尔什的睿智之言浮现在脑海中,即这些综合征的倡导者“在技术方面武装精良,而在判断力方面却不然”。一位富有同情心的观察者可能会说,给患者贴上诸如纤维肌痛和肌筋膜疼痛综合征等非疾病名称的标签可能并非坏事。毕竟,在我们的社会中,精神疾病仍然存在污名,甚至告诉患者这只起部分作用可能会使该患者产生抵触情绪。然而,贴标签可能会产生医源性后果,尤其是在工作场所。此外,对一份典型的支持小组时事通讯的回顾就确凿地证明了这种有害的可能性。时事通讯内所夹传单的作者抱怨说,为“这种无形的残疾”获得社会保障和残疾福利可能“是一场艰苦的战斗。但不要失去希望”。显然,整个医学界并不认可“病情的严重性”,据波士顿流行病学家约翰·梅森博士称,“临床医生的偏见很可能是最大的威胁”。敦促患者前往当地的医学图书馆,找出四篇特定的文章,这些文章声称与关节炎患者相比,纤维肌痛患者有更多的“压力”“日常烦恼”以及工作困难。如果找不到这些文章,就告诉患者向律师求助。尽管并非所有人都认为“慢性疲劳综合征”和纤维肌痛是同一种疾病,但“国立卫生研究院(原文如此)已将这两种情况归为一类。这可能对你有利”。(一份美国政治宣传资料售价8美元,但会免费提供一份有华盛顿特区地址的美国参议员名单。)这些人将自己视为值得在奥普拉·温弗瑞脱口秀上闪亮登场的受害者。一种苦涩感油然而生;一位实际上卧床不起的得克萨斯州家庭主妇在《父母》杂志上写道:“一些医生可能会放弃,并告诉你你是个疑病症患者。”(摘要截选至400字)