Miscellaneous
Medicine is so messed up. It has been fatally bitten by its own dogma. When singer-songwriter Dana Parish suddenly got very sick, she quickly had a correct diagnosis of Lyme disease and was given the standard antibiotic treatment. But Dana never fully recovered and eventually ended up in heart failure. Dana saw many top doctors in New York and they all missed the ongoing underlying infection that would lead to Dana’s heart failure. None of these physicians could wrap their heads around the idea that Dana had been under treated for Lyme disease and it was causing her impending death. Like other medically marginalized and discriminated diseases, chronic Lyme infection has been maligned and neglected by the very system that purports to provide medical care. This reflects the heart of the problem with our health care: entrenched discriminatory dogma in a closed system. Eventually Dana found Dr Steven Phillips, who was already an internationally renowned physician specializing in complex, chronic diseases when he became a patient himself. After nearly dying from his own mystery illness, he experienced firsthand the medical community’s ignorance about the pathogens that underlie a deep spectrum of serious conditions—from fibromyalgia, multiple sclerosis and myalgic encephalomyelitis (MEcfs) to depression, anxiety, OCD and neurodegenerative disorders. In their book Chronic: The Hidden Cause of the Autoimmune Pandemic, Dana and Dr Phillips explore the science behind common infections that are difficult to diagnose and treat and debunk widely held false beliefs by doctors that keep patients chronically sick. With the Covid pandemic still going parabolic, and the number of Long Covid patients with chronic autoimmune symptoms also skyrocketing, their book could not be more timely. Connect with Dana Parish: Thechronicbook.com Facebook.com/thechronicbook Twitter @Lymebook IG: Instagram.com/thechronicbook Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions. Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description: RemediesPodcast@gmail.com Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.** Email me to learn more or book an appointment: RemediesOnlineCounseling@gmail.com Scott Simpson: Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.