Despite overwhelming evidence and countless lived experiences, Post-COVID-19 Neurological Syndrome (PCNS) remains poorly defined and largely neglected in healthcare systems around the world. The scientific community is still struggling to characterise the condition, often comparing it to blind individuals attempting to describe an elephant—each seeing only a piece of the whole. As a result, clinicians, researchers, and policymakers continue to work in silos, producing fragmented care models and uncoordinated interventions that rarely help and often confuse. Across the globe, thousands of well-intentioned clinicians are launching personal websites, co-designing symptom trackers, and building bespoke rehabilitation protocols, yet these efforts lack coherence, evidence, or systemic integration. Patients report going from one provider to another with no clear diagnosis, care plan, or pathway to recovery. The gap between patient need and professional response has never been wider. This chapter explores the structural, scientific, and cultural barriers that prevent PCNS from being properly addressed. It examines failures in diagnostic recognition, data collection, care coordination, health professional training, and policy leadership. Most critically, it argues that without acknowledging PCNS as a standalone neurological syndrome, we will continue to mismanage it, mislabel it, and leave millions suffering in silence. This is not just a failure of medicine. It is a failure of imagination, integrity, and responsibility. The time to name the elephant is now.

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The Elephant We Refuse to Name: Barriers in PCNS Care

  • Reuben Parama Iswara,
  • Tissa Wijeratne

摘要

Despite overwhelming evidence and countless lived experiences, Post-COVID-19 Neurological Syndrome (PCNS) remains poorly defined and largely neglected in healthcare systems around the world. The scientific community is still struggling to characterise the condition, often comparing it to blind individuals attempting to describe an elephant—each seeing only a piece of the whole. As a result, clinicians, researchers, and policymakers continue to work in silos, producing fragmented care models and uncoordinated interventions that rarely help and often confuse. Across the globe, thousands of well-intentioned clinicians are launching personal websites, co-designing symptom trackers, and building bespoke rehabilitation protocols, yet these efforts lack coherence, evidence, or systemic integration. Patients report going from one provider to another with no clear diagnosis, care plan, or pathway to recovery. The gap between patient need and professional response has never been wider. This chapter explores the structural, scientific, and cultural barriers that prevent PCNS from being properly addressed. It examines failures in diagnostic recognition, data collection, care coordination, health professional training, and policy leadership. Most critically, it argues that without acknowledging PCNS as a standalone neurological syndrome, we will continue to mismanage it, mislabel it, and leave millions suffering in silence. This is not just a failure of medicine. It is a failure of imagination, integrity, and responsibility. The time to name the elephant is now.