An exercise Case Study in Syringomyelia, EDS & Dysautonomia
In May 2026, exercise physiologist Dr. David P. Ferguson, PhD, FACSM, ACSM-CEP — a professor at Michigan State University and board exercise performance advisor for the I AM HEARD Coalition — conducted a full physiological workup on our co-founder, James Shaffer. James is a former high-level competitive athlete now living with syringomyelia, Ehlers-Danlos Syndrome (EDS), and dysautonomia. The goal was to find measurable, scientific validation for symptoms so many in our community experience but that often go dismissed.
Below is an easy-to-follow summary of what the testing found. The complete report, with all raw data and charts, is available in the section below for anyone who wants to explore it in full.
What Was Tested
Dr. Ferguson evaluated five areas of James' physiology:
Resting metabolism — how many calories his body burns at rest and what fuel it uses
Body composition — his ratio of fat to muscle
Aerobic fitness (VO₂max) — how his body performs as exercise intensity increases
Heat tolerance — how his body handles an hour of sustained heat stress
Autonomic nervous system function — the automatic systems controlling heart rate, blood pressure, and temperature, examined across all the testing above
Key Findings, in Plain Language
1. A strong engine. At rest, James burns roughly 2,744 calories a day, powered mostly by fat rather than carbs — a sign of a well-developed cardio system. His body composition (17.4% body fat with high lean muscle mass) and his VO₂max of 53.3 mL/kg/min both place him firmly in well-trained-athlete territory for a 29-year-old man.
2. An engine that can't sustain itself. Even with strong maximum capacity, James starts fatiguing at a lower workload than expected for someone this fit. In practical terms, the comfortable zone between "working hard" and "hitting a wall" is much narrower for him than it would be for a similarly fit person without his diagnoses.
3. A heart rate that won't behave. This was the most consistent finding across every single test. Whether James was resting, exercising, or sitting in a heat chamber, his heart rate climbed unusually fast and stayed abnormally high — regardless of how hard his body was actually working. During the heat test, his heart rate sustained 180–185 beats per minute for much of the hour — rates typically seen only during near-maximal exertion, despite him not exercising hard.
4. Heat that doesn't roll off him like it should. James sweat effectively (about 2 liters per hour) and stayed well hydrated — he did everything right. But despite that, his core temperature climbed steadily throughout the hour-long heat test, from about 99.1°F to nearly 102°F, in a room set to just 80°F. That's a sign his body was generating more heat than it could release.
5. The common thread: an autonomic system working against him. Dr. Ferguson's central conclusion is that none of this reflects poor fitness — it reflects a regulation problem. The autonomic nervous system runs your heart rate, blood pressure, and temperature control automatically, without you thinking about it. In James, this system isn't calibrated correctly, a pattern known as dysautonomia. This lines up directly with his existing diagnoses: syringomyelia can physically disrupt the spinal cord's autonomic nerve pathways, EDS's connective tissue differences affect blood vessel tone and circulation, and his diagnosed dysautonomia describes exactly this kind of misregulation. Together, these conditions push his body to work harder than the moment calls for, while making it harder to release heat efficiently even when he's doing everything else right.
Why This Matters for Our Community
This isn't just James' story — it's validation for the racing heart, heat intolerance, and "why am I so exhausted when I look fine" experiences so many in our syringomyelia, EDS, and dysautonomia community live with daily. The data shows these symptoms aren't about effort or being out of shape — they're measurable physiological consequences of these conditions, and they deserve to be taken seriously by providers, employers, and loved ones alike.
A Note on This Data
This report reflects the physiological profile of one individual and is shared for educational purposes only. It is not a diagnostic tool and should not be used to draw conclusions about any other person's health. Always consult your own care team about your specific symptoms and testing needs.
Report authored by David P. Ferguson, PhD, FACSM, ACSM-CEP, Michigan State University, dated May 22, 2026. Full report available below.
