Mendenhall Emily, Kamau Lucy W, Kenworthy Nora, Bosire Edna N
Georgetown University School of Foreign Service, Washington, DC, USA.
Brain and Mind Institute, Aga Khan University, Nairobi, Kenya.
Global Health. 2025 May 30;21(1):33. doi: 10.1186/s12992-025-01120-9.
Digital activism around Long Covid has reverberated around the globe, as patients, researchers, and clinicians worked together to understand the chronic condition. However, Long Covid networks, much like other social networks, have hierarchies and barriers that can impede equitable access. In this article, we examine how the global digital center and periphery shape how people with Long Covid connect to networks to learn about their illness symptoms, diagnoses, treatments, and experiences. We introduce case narratives of two Kenyan women-one elite Nairobian who was connected to the digital center and another middle class woman who connected with her through a peripheral digital community-to describe how elite patients were engaged at the digital center, and non-elite patients were engaged in the periphery with digital and non-digital connections through which they cultivated other social networks to communicate, share, and experience their illness experiences. The Kenyan case study introduces a context where people have sophisticated digital lives and are engaged in global information networks. Yet, we argue that some Long Covid patients' experiences are impossible to divorce from the digital activism that has drawn together a remarkable global patient community, causing a ripple effect on how people define and experience the self and illness throughout the world. We conclude that many Kenyans may be engaging with digital networks differently and from different places of geographic, cultural, linguistic, and technological power, possibly cultivating divergent idioms, interpretations, and experiences of the post-viral condition. This demonstrates not only how social networks function at the digital periphery but also the complexities situated within the periphery itself, which is at important social nodes, connected to the digital center.
围绕“长新冠”的数字行动主义已在全球产生反响，患者、研究人员和临床医生共同努力了解这种慢性病。然而，“长新冠”网络与其他社交网络一样，存在等级制度和障碍，可能会阻碍公平获取信息。在本文中，我们研究全球数字中心和边缘地区如何塑造“长新冠”患者与网络的连接方式，以便他们了解自己的症状、诊断、治疗方法和患病经历。我们介绍了两位肯尼亚女性的案例——一位是与数字中心有联系的内罗毕精英女性，另一位是通过边缘数字社区与她建立联系的中产阶级女性——以描述精英患者如何参与数字中心，而非精英患者如何在边缘地区通过数字和非数字连接参与其中，通过这些连接，他们建立了其他社交网络来交流、分享和体验自己的患病经历。肯尼亚的案例研究引入了一个背景，即人们拥有复杂的数字生活并参与全球信息网络。然而，我们认为，一些“长新冠”患者的经历与将一个非凡的全球患者社区聚集在一起的数字行动主义密不可分，这对人们在全球范围内定义和体验自我及疾病产生了连锁反应。我们得出结论，许多肯尼亚人可能以不同方式、从不同的地理、文化、语言和技术力量位置参与数字网络，可能会形成关于病毒后状况的不同习语、解释和体验。这不仅展示了社交网络在数字边缘地区的运作方式，也展示了边缘地区本身的复杂性，它处于重要的社会节点，与数字中心相连。
