Ella talks with Dr. Bruce Feldstein, a former emergency medicine physician who, after a disabling injury, transitioned into spiritual care at Stanford as a chaplain. They discuss themes of identity, the desire for control, and navigating life's uncertainties. Ella also shares her journey of acquiring a chronic illness, the motivation behind the Dysunderstood platform, and the importance of community, acceptance, and resilience in the face of unexpected life changes.
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Some relevant definitions:
Postural Orthostatic Tachycardia Syndrome (POTS)- A clinical diagnosis where patients present with excessive increase in heart rate upon assuming upright posture or physical activity like dizziness and palpitations. (Adult diagnostic criteria requires 30 bpm heart rate change when going from supine to upright position)
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)- a chronic illness marked by severe, unexplained fatigue lasting over six months, unrefreshing sleep, cognitive impairment ("brain fog"), and post-exertional malaise (symptoms worsening after activity). The diagnosis is clinical, often following criteria like the 2015 Institute of Medicine (IOM) guidelines, which require the presence of fatigue, post-exertional malaise, unrefreshing sleep, and either cognitive impairment or orthostatic intolerance. There is no definitive test, and treatment focuses on symptom management.
Long COVID (LC)- A clinically diagnosed condition characterized by persistent symptoms and long-term health issues following a COVID-19 infection; also known as post-acute sequelae of SARS-CoV-2 (PASC).
Low-Dose Naltrexone (LDN)- A medication used to modulate the immune system and potentially treat chronic pain and autoimmune conditions.
Orthostatic Intolerance (OI)- A clinical condition where abnormal symptoms are brought on by quiet, upright posture, often alleviated by lying down. Symptoms include abnormal heart rate increase and/or blood pressure decreases, leading to dizziness and possibly fainting.
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