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 […]
cancer
Transforming research participation
Below is a letter I wrote in response to Tania Simoncelli’s article, “From Bedside to Bench and Back,” (Issues in Science and Technology, Summer 2023). Read all the responses here. Biomedical research has blind spots that can be reduced, as Tania Simoncelli writes, by “centering the largest stakeholders in medicine—the patients.” By focusing on rare […]
Wow! How? Health
Wow! How? Health is a LinkedIn newsletter that will feature the Wow! stories of patients, survivors, and caregivers who are doing extraordinary things, along with the How? lessons that we all can learn. Subscribe to the newsletter or to my blog (I’ll cross-post here). Today’s story is about how connecting with a peer, a “just-in-time someone-like-you,” can make all the […]
Project management for caregivers
I am a caregiver. I help coordinate the health and home care for an elder loved one who, for the purposes of maintaining a bit of anonymity, I will call “M.” He is a healthy, happy octogenarian. We have known each other for nearly 40 years, but we are not related by blood. I am […]
Public Q&A: Peer support for parents of teens with cancer
Helen Burstin, MD, reached out to ask if I know of an online peer-to-peer support group for parents of teens with cancer. For anyone who knows Helen: Don’t worry, it’s not for her own family. She is asking on behalf of a friend, who writes: “I’ve been able to find groups for parents of children […]
What’s your advice?
My dad was a survivor — of a heart attack in his 50s, kidney cancer in his 60s, and an initial diagnosis of melanoma in his 70s. Melanoma recurrence and complications of treatment are what finally got him. A lifelong runner, Dad kept meticulous notes about his mileage and heart rate on paper. He bought […]
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