Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders
Hello and welcome to Untangling PANDAS & PANS, a podcast about two relatively unknown medical disorders characterized by the sudden and dramatic onset of obsessions and compulsions, vocal or motor tics, or restricted eating behavior -- and a whole host of other symptoms -- following strep or other bacterial or viral infection. Sometimes overnight. I have the privilege of interviewing some of the top researchers and clinicians in the rapidly growing field of Infection-Associated, Immune-Mediated Neuropsychiatric Disorders. That’s a mouthful of words that encompasses the strangely named disorders, PANDAS and PANS.
My name is Dr. Susan Manfull. I am a social psychologist, the Executive Director of The Alex Manfull Fund, and the mother of Alex Manfull, who died at 26 years old due to PANDAS, a neuropsychiatric disorder my husband and I knew next to nothing about, certainly not that our daughter could die from it.
PANDAS is an acronym for “Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.” This disorder, first defined in 1998 at the National Institute of Mental Health, describes the acute and dramatic onset of obsessions and compulsions and/or motor or vocal tics as well as a whole host of neuropsychiatric symptoms in temporal association to a Group A streptococcal infection. PANS, which stands for Pediatric Acute-onset Neuropsychiatric Syndrome, refers to a similar symptom presentation -- with obsessions and compulsions or restricted eating being the cardinal symptoms -- due to a broader category of triggers (typically bacterial or viral infections). Both are thought to stem from a dysregulated immune system, probably leading to an over-production of autoantibodies and concomitant excess brain inflammation, particularly in the basal ganglia.
Symptoms vary from person to person and range in severity from mild to severe, and generally have a relapsing and remitting course. With early recognition and correct treatment, these disorders can be successfully treated. Today, it is no longer viewed as a diagnosis limited to the pediatric population.
Please stay tuned after each episode to listen to a one-minute public service announcement about PANDAS & PANS and The Alex Manfull Fund. To learn more, please visit our website: TheAlexManfullFund.org.
This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.
Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders
S2 E18: My Conversation with Dr. Mikki Tal about How She Is Revolutionizing Our Understanding of Infection-Associated Chronic Illness
What makes some people vulnerable to devastating chronic illness after infections that most recover from easily? Dr. Michal "Mikki" Tal, pioneering immunoengineer at MIT, is tackling this question through her groundbreaking Maestro study - the largest clinical research project currently underway at the prestigious institution.
Personal tragedy fuels Dr. Tal's scientific mission. After losing both an uncle to HIV/AIDS and a cousin to meningococcal meningitis, she developed a profound respect for infectious diseases and determination to understand immune system dysfunction. Now, her research examines why infection-associated chronic illnesses like Long COVID and chronic Lyme disease disproportionately affect women, what biological mechanisms prevent recovery, and how we might predict who's at risk.
The conversation explores fascinating biological concepts, including how our immune cells recognize "eat me" versus "don't eat me" signals, and how some pathogens have evolved to manipulate these systems. Dr. Tal introduces her powerful metaphor: "If you took a bacterial road to Rome or a viral road to Rome, once you're in Rome, does it matter anymore how you got there?" This question frames her approach to understanding whether treatment should focus on the triggering infection or the resulting immune dysfunction.
Dr. Tal advocates for a revolutionary "systems medicine" approach that bridges traditional medical specialties to address complex conditions. Her research employs cutting-edge techniques to objectively measure everything from blood vessel appearance to cognitive function, seeking patterns that might predict or explain chronic illness development. Most exciting are the preliminary findings showing significant cognitive impacts, particularly in reaction time, that could immediately inform clinical care.
The Maestro study continues seeking participants, particularly those newly diagnosed with Lyme disease. By examining genetics, microbiome, immune responses, and countless other variables simultaneously, Dr. Tal hopes to finally unlock the mystery of why some people can't bounce back from infections - and how we might help them recover. If you've recently been diagnosed with Lyme disease, consider participating in this groundbreaking research that could change medicine's understanding of chronic illness forever.
Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.
Credits: Music by Kingsley Durant from his "Convertible" album
To learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.org
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