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Divided bodies: Lyme disease, contested illness and evidence-based medicine Abigail A Dumes. Durham, NC: Duke University Press. 2020. 360 pp. Paper ISBN: 978-1-4780-0666-4 / Cloth ISBN: 978-1-4780-0598-8.
Sociology of Health & Illness ( IF 2.957 ) Pub Date : 2021-06-17 , DOI: 10.1111/1467-9566.13319
Frans Jackop Lourens Robberts 1
Affiliation  

Divided Bodies is an excellent book for scientists, clinicians and the layperson interested in the phenomenon of disease, particularly meanings of disease and illness, and cures and healing, in the context of an increasingly bureaucratic system of administration. It draws attention to the limitations of laboratory testing as arbiter of illness and shows how the dogmatic belief in evidence-based medicine is in actual fact a turning away from science toward a biopolitics for control. The town of Lyme in Connecticut became associated with an illness linked to tick bites and presenting with the characteristic signs of a bulls-eye rash, arthritis and fever, and symptoms of fatigue and headache. The illness was attributed to a spiral-shaped bacterium Borrelia burgdorferi, transmitted by infected ticks. Human infection results in varying degrees of disease, with signs and symptoms not always those initially described at Lyme, overlapping with other common diseases. The Lyme Disease (LD) controversy is mainly between those, described by Dumes as the ‘mainstream’, who believe that LD is easily diagnosed and treated, and the ‘Lyme-literate’ who believe that diagnostic tests have limitations when used for ruling out LD.

Often seen with newly described diseases, laboratory testing was initially crude yielding many false-positive cases that led to the later development of more stringent diagnostic criteria. It is out of the confluence of fear among Americans for contracting a newly described disease, the non-specific symptoms that overlap with other illnesses, and the imposition of stringent diagnostic criteria that left many without a bureaucratically sanctioned diagnosis, that the phenomenon of chronic LD emerged and is the subject of this book.

Chronic Lyme disease, Abigail Dumes describes, is perceived by ‘mainstream’ physicians as a medically unexplained illness, a subjective experience without physical distress that does not warrant biological intervention. Other well-known illnesses whose biological reality is contested include chronic fatigue syndrome, Gulf War syndrome, and multiple chemical sensitivity – diseases you have to fight for. Dumes explains the mainstream position as the result of a historically contingent belief system of practice that is reproduced through powerful stakeholders such as the Infectious Disease Society of America (IDSA) promoting ‘evidence-based medicine’ (EBM), now the dominant paradigm in the United States, and often employed as a means to restrict medical insurance coverage. The EBM movement emerged in the late twentieth century to standardize the administration of health care and create objective criteria for disease categories. However, patients with illness resembling LD often with positive laboratory test results below the threshold established by the IDSA, and improve with LD antibiotic therapy. In recognition of these patients falling through the EBM cracks and thus experiencing delegitimized suffering, the International Lyme and Associated Diseases Society (ILADS) was formed. Thus LD became a contested illness, and the concept of ‘divided bodies’ in the book to ‘highlight the epistemic and embodied tensions that characterize the phenomenon of contested illness in an era of evidence-based medicine’.

Using the methodology of quantum ethnography, the author occupies multiple positions to map the relationships between different perspectives. Section one sets out the LD controversy invoking the metaphor of a rhizome as an unpatterned connectivity between nodes, perpetually becoming and dynamic. This is an apt metaphor as the clinical presentation, and the bacteria themselves are characterized by an entangled phylogeny and ever-changing nomenclature succinctly summarized by the author. This is an important perspective captured by Dumes to consider in the context of evolving laboratory testing methods and the geographic distribution of species and strains.

Section two is themed around preventing LD and enters the world of local realities shaped by the American aesthetic of nature encompassing an affective spectrum resulting from attraction and repulsion. Dumes thus argues successfully that LD can be better understood through an ‘epidemiology of affect’, that is, as I understand it, a pattern of illness (unwellness) behaviour emerging from the tension between attraction and repulsion to the degree of experience of being afflicted by some thing. The American attraction to nature, enabled by socioeconomic privilege, is simultaneously affected by a perception of an increasingly toxic environment existing only because of the possibility of ultimate detoxifications. Dumes argues that these enactments of LD practices are concurrent with a change in conceptions of quarantine from an underlying assumption that the environment supports health to one where the environment is illness-inducing necessitating isolating the body. Such practices she argues are characterized by affective social relations that make LD meaningfully understood through an ‘epidemiology of affect’.

Section three, Living Lyme, describes how LD is experienced by patients and understood across the standard-of-care divide. These representations centres around the psychosomatic versus organic disease debates of chronic LD, highlighting the gendered and skin colour dimensions in its construction. As such, there are more barriers for those with dark skins to become legitimate LD sufferers since ticks are not associated with inner-city life and the classic bulls-eye rash is not prominent.

Section four is about diagnosing and treating Lyme. This section questions the mainstream dismissal of the patient as barometer of their own healing in the absence of objective organic markers of disease and draws attention to a loss of the art of healing for the sake of classifications meant to administer health. This theme continues in section five turning explicitly to EBM and the biopolitics of contested illness. Dumes argues convincingly that EBM can be better understood as a technology of biopower that regulates bodies for efficiency and renders a form of ‘biolegitimacy’ and simultaneously, illegitimacy.

The book concludes by drawing attention to the need for an engagement with the embodied and the epistemic to create a theoretical framework that better characterizes contemporary production of biological truths. Abigail Dumes effectively presents a transdisciplinary approach for articulating the rhizomatic representations of illness that yields the phenomenon of Lyme Disease. It was a joy to read.



中文翻译:

分裂的身体:莱姆病、有争议的疾病和循证医学 Abigail A Dumes。北卡罗来纳州达勒姆:杜克大学出版社。2020. 360 页。纸 ISBN:978-1-4780-0666-4 / 布 ISBN:978-1-4780-0598-8。

在日益官僚化的行政系统的背景下,《分裂的身体》是一本优秀的书,适合对疾病现象感兴趣的科学家、临床医生和非专业人士,特别是疾病和疾病的意义,以及治愈和治愈。它提请注意实验室检测作为疾病仲裁者的局限性,并表明对循证医学的教条信念实际上是如何从科学转向生物政治以进行控制。康涅狄格州的莱姆镇与一种与蜱虫叮咬有关的疾病有关,并表现出牛眼皮疹、关节炎和发烧的特征性迹象,以及疲劳和头痛的症状。这种疾病归因于螺旋形细菌伯氏疏螺旋体,由受感染的蜱传播。人类感染会导致不同程度的疾病,其体征和症状并不总是最初在莱姆描述的,与其他常见疾病重叠。莱姆病 (LD) 的争论主要发生在那些被 Dumes 描述为“主流”的人之间,他们认为 LD 很容易诊断和治疗,而“莱姆病学者”则认为诊断测试在用于排除时有局限性LD。

经常在新描述的疾病中看到,实验室测试最初很粗糙,产生了许多假阳性病例,导致后来制定了更严格的诊断标准。正是由于美国人对感染新描述的疾病的恐惧、与其他疾病重叠的非特异性症状以及强加的严格诊断标准使许多人没有得到官僚认可的诊断,慢性 LD 现象才得以形成。出现并成为本书的主题。

阿比盖尔·杜姆斯 (Abigail Dumes) 描述,慢性莱姆病被“主流”医生认为是一种医学上无法解释的疾病,一种没有生理痛苦的主观体验,不需要生物干预。其他众所周知的生物现实受到质疑的疾病包括慢性疲劳综合症、海湾战争综合症和多种化学敏感性——您必须为之奋斗的疾病。杜姆斯将主流立场解释为历史上偶然的实践信仰体系的结果,该体系通过强大的利益相关者复制,例如美国传染病学会 (IDSA) 促进“循证医学”(EBM),现在是该领域的主导范式。美国,并经常被用作限制医疗保险覆盖范围的手段。EBM 运动出现在 20 世纪后期,旨在标准化医疗保健管理并为疾病类别制定客观标准。然而,患有类似 LD 疾病的患者通常实验室检测结果呈阳性,低于 IDSA 规定的阈值,并通过 LD 抗生素治疗改善。国际莱姆病及相关疾病协会 (ILADS) 成立,认识到这些患者从 EBM 裂缝中掉下来并因此经历了非法化的痛苦。因此,LD 成为一种有争议的疾病,书中“分裂的身体”的概念“突出了在循证医学时代表征有争议疾病现象的认知和具体张力”。患有类似 LD 疾病的患者通常实验室检测结果呈阳性,低于 IDSA 规定的阈值,并通过 LD 抗生素治疗改善。国际莱姆病及相关疾病协会 (ILADS) 成立,认识到这些患者从 EBM 裂缝中掉下来并因此经历了非法化的痛苦。因此,LD 成为一种有争议的疾病,书中“分裂的身体”的概念“突出了在循证医学时代表征有争议疾病现象的认知和具体张力”。患有类似 LD 疾病的患者通常实验室检测结果呈阳性,低于 IDSA 规定的阈值,并通过 LD 抗生素治疗改善。国际莱姆病及相关疾病协会 (ILADS) 成立,认识到这些患者从 EBM 裂缝中掉下来并因此经历了非法化的痛苦。因此,LD 成为一种有争议的疾病,书中“分裂的身体”的概念“突出了在循证医学时代表征有争议疾病现象的认知和具体张力”。国际莱姆病及相关疾病协会(ILADS)成立。因此,LD 成为一种有争议的疾病,书中“分裂的身体”的概念“突出了在循证医学时代表征有争议疾病现象的认知和具体张力”。国际莱姆病及相关疾病协会(ILADS)成立。因此,LD 成为一种有争议的疾病,书中“分裂的身体”的概念“突出了在循证医学时代表征有争议疾病现象的认知和具体张力”。

运用量子民族志的方法论,作者占据多个位置来映射不同视角之间的关系。第一节阐述了 LD 争议,该争议将根茎比喻为节点之间的无模式连接,永久生成和动态。作为临床表现,这是一个恰当的比喻,细菌本身的特点是复杂的系统发育和作者简洁总结的不断变化的命名法。这是 Dumes 在不断发展的实验室测试方法以及物种和菌株的地理分布的背景下考虑的一个重要观点。

第二部分的主题是防止 LD,并进入由美国自然美学塑造的当地现实世界,包括由吸引和排斥产生的情感光谱。因此,Dumes 成功地论证了 LD 可以通过“情感流行病学”更好地理解,也就是说,按照我的理解,一种疾病(不适)行为模式,从吸引和排斥之间的紧张关系到受折磨的体验程度而出现由于某. 在社会经济特权的推动下,美国人对自然的吸引力同时受到对存在越来越有毒环境的看法的影响,这仅仅是因为最终解毒的可能性。杜姆斯认为,这些 LD 实践的制定与隔离概念的变化同时发生,从环境支持健康的基本假设转变为环境导致疾病而必须隔离身体的假设。她认为这种做法的特点是情感社会关系,通过“情感流行病学”使 LD 得到有意义的理解。

第三部分,Living Lyme,描述了患者如何体验 LD 以及跨标准护理鸿沟如何理解 LD。这些表述以慢性 LD 的心身疾病与器质性疾病的争论为中心,突出了其结构中的性别和肤色维度。因此,由于蜱虫与市中心生活无关,并且经典的牛眼皮疹并不突出,因此对于那些皮肤黝黑的人来说,成为合法的 LD 患者存在更多障碍。

第四部分是关于诊断和治疗莱姆病。本节质疑在缺乏客观的疾病有机标志物的情况下将患者视为自身愈合晴雨表的主流观点,并提请注意为了管理健康的分类而失去了治疗艺术。这个主题在第五部分继续,明确转向循证医学和有争议的疾病的生命政治。杜姆斯令人信服地认为,EBM 可以更好地理解为一种生物动力技术,它调节身体以提高效率并呈现一种“生物合法性”形式,同时也是非法性。

本书最后提请注意需要与具身和认知进行互动,以创建一个理论框架,以更好地表征当代生物真理的生产。阿比盖尔杜姆斯有效地提出了一种跨学科的方法来阐明产生莱姆病现象的疾病的根茎表现。阅读是一种享受。

更新日期:2021-06-18
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