Lack of Reliable Information Plagues COVID Long-Haulers, Study Finds

Many individuals suffering from long COVID, also known as long-haulers, face significant challenges due to a scarcity of trustworthy information about their condition. A recent study conducted by researchers from the University of Maryland highlights how these patients often struggle with misinformation, disinformation, and a lack of clear guidance from health authorities.

Adriana Alatorre, a 49-year-old from Pittsburgh and avid runner, exemplifies the typical long-hauler experience. After a mild COVID-19 infection, she initially recovered but soon developed symptoms such as persistent exhaustion, low blood pressure, and fatigue that interfered with daily activities like laundry and grocery shopping. Despite her increasing distress, reliable information and effective treatment options remained elusive, leaving her frustrated and self-advocating in her search for answers.

Alatorre's story is not unique. The study reveals that approximately 400 million long COVID sufferers worldwide often encounter skepticism and dismissal from healthcare providers, compounded by conflicting or inadequate government guidance. Many turn to online forums, social media, and independent research, including historical outbreaks like the 1918 flu, to piece together potential remedies. In the process, some even resort to stockpiling medications like Paxlovid without medical authorization, risking further health issues.

The investigation, which surveyed 135 long-haulers and included in-depth interviews with 29 individuals, found widespread distrust in governmental advisories—they were viewed as irrelevant or contradictory. Participants expressed feelings of being ignored or misled by health agencies, leading some to seek advice from informal sources, which often contained unreliable or misleading content.

This phenomenon, termed 'information marginalization,' has contributed to negative mental health outcomes such as depression, cynicism, and even rule-bending behaviors to obtain care or medication. The researchers emphasize the urgent need for better communication strategies to support this marginalized group.

The study urges healthcare professionals, journalists, and public health officials to improve dissemination of accurate, accessible, and empathetic information. Professor Brooke Fisher Liu from University of Maryland highlights how current communication gaps hinder patients' trust and recovery. The researchers advocate for innovative partnerships with media and PR professionals to make scientific findings more relatable and available to the public.

Alatorre also shares her own journey through multiple Facebook support groups, which often contain a mix of helpful and unverified advice, underscoring the importance of reliable sources. She has proactively sought medical consultations internationally and identified associated conditions such as fatty liver, demonstrating the complexity of long COVID diagnoses.

This research, part of the Pandemic Readiness Initiative, emphasizes that addressing the needs of marginalized populations like long-haulers is vital not only for COVID-19 but for future health crises. The authors suggest that understanding and addressing 'forgotten publics'—those overlooked in emergency responses—is essential to prevent similar issues in upcoming emergencies.

Ultimately, the study calls for systemic improvements in crisis communication, transparency, and community engagement, aiming to better equip both medical professionals and the public in managing ongoing and future health challenges.