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The term “Medically Unexplained Symptoms” (MUS) describes chronic symptoms for which medical investigations fail to reveal a specific pathology or biomarker. Even as MUS are among the most prevalent chronic health problems in the global north, patients who experience them reside in a nebulous space. Such nebulousness is heightened for women patients. Moreover, women report MUS at higher rates than men. In this review essay, we analyze the medicalization and feminization processes vis-à-vis MUS by focusing on two particular syndromes: Fibromyalgia (FMS) and Long COVID (LC). FMS and LC present clear parallels that allow us to trace an unhappy marriage of women and MUS. We demonstrate how the medical constructions of these two syndromes as knowledge categories are representations of medical uncertainty vis-a-vis women patients. We then scrutinize the resulting gendered consequences of these categories for the illness experience. We conclude our review by calling for a cultural reorientation in our thinking about MUS that centers a recognition that the origins and manifestations of a great deal of human suffering reside outside of medicine’s ways of knowing. In so doing, we connect to foundational claims in medical anthropology and sociology; namely, that illness is more than disease, and health cannot be achieved primarily via biomedical means.

L’engagement dei pazienti è riconosciuto come un elemento essenziale per la qualità dei servizi per le patologie croniche. Il contributo si propone di esplorare le dinamiche socioorganizzate che favoriscono l’engagement dei pazienti e la loro trasformazione da consumatori passivi di cura a partner. Sarà presentata una ricerca collaborativa, realizzata con due servizi di un grande ospedale del Nord Italia, in cui pazienti e personale sanitario hanno cooperato per valutare e riorientare i percorsi diagnostico-terapeutici verso processi di lavoro partecipati centrati sul paziente. Strumenti di analisi delle pratiche sono stati l’analisi proattiva del rischio clinico (HFMEA) e l’analisi psicosociale degli snodi decisionali, applicati nell’ambito di focus group misti (pazienti, medici, infermieri, psicologi, assistenti sociali). I risultati hanno consentito di evidenziare l’intrecciarsi di aspetti clinici e organizzativi nelle rappresentazioni della natura dell’engagement e la sua caratterizzazione come un processo oscillante e instabile. Inoltre, attraverso l’analisi del processo d’indagine, è stato possibile identificare assunti e valori professionali che rischiano di dar vita ad una partecipazione apparente. La ricerca offre indicazioni per la progettazione di pratiche di gestione collaborativa dei percorsi di cura., Patient engagement is recognized as essential for the quality of services for chronic diseases. The paper aims to explore the socio-organizational dynamics associated with the promotion of patients' engagement and their transformation from passive consumers of medical services to partner. We present a collaborative study conducted with two health care services of a large hospital in Northern Italy, where patients and healthcare personnel cooperated to evaluate and reorient the clinical pathways towards participated processes centered on the patient. Practices were analyzed through a revised version of proactive analysis (HFMEA) and the psycho-social analysis of decision nodes of the clinical pathway, applied in the context of focus groups with mixed composition (patients, physicians, nurses, psychologists, social workers). Results revealed different representations of the nature of engagement and its nature as a changing and unstable process. In addition, the study highlighted professional assumptions and values that can give rise to an apparent participation. The study offers indications for designing collaborative practices in managing clinical pathways.