We are deeply saddened by the sudden death of Marcie Zinn, PhD, who was a dedicated researcher, advocate and person with myalgic encephalomyelitis (ME). Marcie died of sudden heart failure on Dec. 28, 2019.
Marcie and her husband, Mark, founded the Neurocognitive Research Institute (NCRI), a non-profit that specializes in 3D-mapping of the brain to assess brain activity and linkage between brain regions. The neurocognitive assessments they conduct are being used for ME research, and to help people with ME win disability claims.
Marcie was diagnosed with herpes viral encephalitis in 2009, which developed into ME, and her interest turned toward using her extensive brain mapping (qEEG / LORETA imaging ) and neuroscience skills for research into ME.
Leonard Jason, PhD, professor at DePaul University, who worked with Marcie on several important publications on ME, said Marcie’s presence in the field will be missed.
“She produced excellent qEEG research that provided a better understanding of how disease states cause disruption to dynamic homeostatic processes, compromising feedback and regulatory mechanisms necessary for properly maintaining the central nervous system and the autonomic nervous system,” Dr. Jason wrote.
Megan Doherty remembered the profound moment when she received validation that ME was causing her life-altering symptoms while participating in one of the Zinn’s qEEG/LORETA studies at DePaul University.
“Like many of us, I spent the first few years of my illness bewildered, frustrated, scared, and gaslighted by medical professionals,” Megan wrote. “Most people dread medical tests coming back positive, but we who have ME understand the surprising, seemingly endless, disappointment of being told, “Everything’s normal, you appear to be perfectly healthy.”
“After countless blood tests and almost as many doctors, I found myself with electrodes attached to my head in Marcie Zinn’s office. I was participating in her qEEG studies at DePaul, and was terrified they wouldn’t find anything. When the results came on the screen, I saw a 3D model of my brain bathed in blue, representing abnormally low brain activity. I asked Mark, her husband, to make sure I understood: that was me, and there was really, truly, something wrong. I started to cry. I was overwhelmed with an ambiguous relief, seeing before my eyes concrete proof that I wasn’t crazy; I was just sick.
“At that moment, Marcie stuck her head in, and saw my vulnerability. She came in and put her hand gently on my arm. She listened, validated my feelings, and told me she understood exactly what I was going through, and what that moment represented for me. She made me feel seen, heard, and that my experience mattered. What she did was simple, but profound. Marcie was one of the first people who made me feel less alone with this horrible disease, and I’ve never forgotten that.”
Marcie Zinn’s Research on ME
Marcie dedicated herself to researching the neurocognitive dysfunctionality of people with ME. She was an author on the publication of 6 studies and reviews focused on ME:
- qEEG / LORETA in Assessment of Neurocognitive Impairment in a Patient with Chronic Fatigue Syndrome: A Case Report
- Small-World Network Analysis of Cortical Connectivity in Chronic Fatigue Syndrome Using Quantitative EEG
- Functional Neural Network Connectivity in Myalgic Encephalomyelitis
- Cortical Hypoactivation During Resting EEG Suggests Central Nervous System Pathology in Patients With Chronic Fatigue Syndrome
- Intrinsic Functional Hypoconnectivity in Core Neurocognitive Networks Suggests Central Nervous System Pathology in Patients With Myalgic Encephalomyelitis: A Pilot Study
- Myalgic Encephalomyelitis: Symptoms and Biomarkers
Marcie was also an advocate for ME, participating at the #MillionsMissing demonstrations in Chicago. She also served on working groups for ME/CFS as part of the Common Data Element (CDE) Project, sponsored by the National Institutes of Health and Centers for Disease Control and Prevention.
Career in Performance Neuroscience
Dr Zinn’s early research and career interests were in Performance Neuroscience and Psychology. She spent more than two decades helping pianists from preschool to concert-level overcome behavioural challenges impeding their art through better teaching practices, behaviour analysis, biofeedback and specialized techniques. Her book Healthy Piano Playing, has recently been cited as one of the top ten books for Piano Pedagogy. She founded the Musician’s Stress Management company (later ArtsNova Consulting Group). Marcie has published dozens of articles and abstracts in scientific journals. View her research profile.
Support NCRI Research for ME
Mark has launched a GoFundME campaign to raise money for the Neurocognitive Research Institute (NCRI) in memory of Marcie. Donate to NCRI in memory of Marcie. (Read more about NCRI, and watch a video about their process.)
“How can we stop ME/CFS progression?” writes Marcie’s husband, Mark. “How can we reverse symptoms and repair the damage caused by ME/CFS? Our research projects seek to answer these questions.
“Marcie was an incredible driving force and life partner to me,” writes Mark. “She had a heart of gold and went out of her way to touch the lives of so many people. Please help memorialize Marcie and support her work at this time… No amount is too small and every dollar is appreciated.”