In his book, The Long Haul, Ryan Prior writes about his advocacy on behalf of people with ME/CFS: Though I had negotiated a fragile truce with the disease, my deeper fear was that it would eventually fully disable me, just as it had done for so many of my friends…At the edge of my every thought […]
key people
Public Q&A: My 5 favorite books on how to defend yourself against the U.S. health care system
Shepherd.com invites authors to write heartfelt reviews of other people’s books on a topic related to their own work. The site is a rabbit hole that you will LOVE exploring, so go ahead and click on, for example, “The best books about America’s toughest time: life in the dirty thirties” or “The best children’s books […]
Covid and the Future of Health
You are cordially invited to a book talk & reception on Wednesday, May 29, at 7pm at the Tabard Inn in Washington, DC. Ryan Prior, author of The Long Haul, and I will discuss how innovative patients are changing medicine for the better and where we see this grassroots movement heading next. If you haven’t […]
Wow! How? Patient Data Rights
Until relatively recently, people living with diabetes were shut out of conversations about improving the devices that keep them alive. Device manufacturers saw clinicians as their customers, not patients, and nobody was asking them to change that stance, including the FDA. Patients and their loved ones were grateful to have insulin pumps and continuous glucose […]
Books I read while writing Rebel Health
While writing my book, Rebel Health, I dove into the history of innovation and of the patient-led scientific revolution. I read the daring adventures of caregivers, survivors, and patients who pushed the edges of what is possible in medicine. I learned about clinicians’ and researchers’ perspectives on the changes happening in health care. And I […]
Wow! How? Ring Theory
The swirl of holiday parties, family gatherings, and gift shopping expeditions (online and offline) have me feeling overwhelmed. And I know I’m not alone. Thanks to the 2023 ARCHANGELS Caregivers & Holidays Survey we have data on a key group of people: Take a moment to think about who in your life is going through […]
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