Make Visible: Understanding Complex Illness

Dr. Michael VanElzakker is a Harvard neuroimmunologist and co-founder of The PolyBio Research Foundation, dedicated to unraveling post-viral illnesses. He discusses the importance of understanding individual drivers of conditions like ME/CFS amidst long COVID. VanElzakker emphasizes the need for holistic approaches to diagnose and treat these complex illnesses, exploring neuroinflammation, the immune-nervous system interplay, and advancements in unbiased research to improve patient care and diagnostics.

Dr. Arman Fesharaki-Zadeh, a behavioral neurologist at Yale, specializes in cognitive deficits and has been working extensively with Long Covid patients. He discusses a groundbreaking treatment protocol using guanfacine and N-acetylcysteine that shows promise in alleviating brain fog and emotional dysregulation. The conversation highlights the intersection of neurology and psychiatry, the need for empirical research, and the critical connections between brain health, sleep, and gut health. Fesharaki-Zadeh advocates for expanding access to effective treatments.

In a thought-provoking discussion, Yale's Prof. Amy Arnsten sheds light on the intricate relationship between stress, inflammation, and cognitive health. She reveals how chronic stress affects the prefrontal cortex, leading to issues like brain fog and emotional dysregulation. Prof. Arnsten also highlights the role of kynurenic acid, particularly in conditions like Long Covid, and shares insights on guanfacine, a drug with potential benefits for cognitive restoration. Her cutting-edge research offers hope for better understanding and treating mental health disorders.

Dr. Lucinda Bateman, a leading expert in ME/CFS, Long Covid, and fibromyalgia, shares her extensive knowledge gained from decades in patient care and research. She discusses advancements in understanding these conditions, emphasizing the importance of collaborative research and patient experiences. Dr. Bateman also highlights the emotional toll of chronic illness, the shift away from traditional therapies towards personalized care, and the need for better clinician education to improve outcomes for patients dealing with complex chronic conditions.

Dr. Boon Lim, a renowned cardiologist and electrophysiologist, returns to explore the autonomic nervous system's crucial role in chronic illness. He likens the body to a factory seeking an off-switch from Long Covid's stress. Using analogies like The Blind Man and the Elephant, he emphasizes the need for a holistic view of health. Dr. Lim discusses stress reduction techniques, including breathwork and mindfulness, backed by science, and highlights the importance of nurturing both mental and physical well-being to combat chronic stress.

Dr. William Hu, a cognitive neurologist at Rutgers Institute for Health, specializes in treating cognitive impairments, particularly in Long Covid. He discusses the physiological basis of brain fog, revealing physiological changes through brain imaging and cerebrospinal fluid analysis. His groundbreaking research identified markers of persistent immune activation in patients, linking it to cognitive decline. The conversation highlights implications for treatments and sheds light on the connection between immune responses and cognitive health in post-viral conditions.

Dr. Boon Lim, a cardiologist and electrophysiology expert, shares his insights on Postural Orthostatic Tachycardia Syndrome (POTS). He highlights the complexities of diagnosing autonomic dysfunction and the importance of detailed patient history coupled with the tilt table test. Dr. Lim discusses how hydration impacts patients' ability to manage symptoms and stresses the significance of movement for those with POTS or long COVID. His humble approach and practical strategies aim to empower patients, making a significant impact on their daily lives.

Hannah Davis and Lisa McCorkell from the Patient Led Research Collaborative (PLRC) highlight their groundbreaking work in patient-driven research on Long Covid and related conditions. They discuss their advocacy achieved through collaborations with organizations like the CDC and WHO, including the introduction of the Long Covid Moonshot Act aimed at securing $1 billion for research annually. Additionally, they launch the Patient-Generated Hypotheses Journal to empower patients in shaping research questions, emphasizing the vital role of lived experiences in addressing chronic illnesses.

Introducing Make Visible, the podcast shining a light on complex chronic illness. Join us every two weeks as journalist Emily Kate Stephens uses her experience of living with an energy limiting condition to bring us the latest research and insights from the world’s leading experts, scientists and healthcare professionals.  Including ME/CFS, Long Covid, EDS, Fibromyalgia, POTS, and more, we delve into the science of invisible illness. makevisible.com