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Susannah Fox

I help people navigate health and technology.

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ME/CFS

Wow! How? Patient Memoirs

August 29, 2024 By Susannah Fox 2 Comments

Four books: The Long Haul; Chasing My Cure; AfterShock; Wide Awake and Dreaming

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 […]

Filed Under: Champions, key people, Networkers, peer-to-peer health care, Seekers, Solvers Tagged With: cancer, David Fajgenbaum, Jessie Gruman, Julie Flygare, Long Covid, Lucy Grealy, ME/CFS, narcolepsy, rare diseases, Ryan Prior, Wow! How? Health

Whose needs are not met?

September 8, 2021 By Susannah Fox 19 Comments

Questions marks painted on pavement

For years I tried to find ways to explain the particular challenges facing people with undiagnosed and rare health conditions. I decided to create a visualization showing the wide spectrum of people’s health needs and I’d like some feedback on it. Imagine a horizontal line. At the far left side are the people whose needs […]

Filed Under: peer-to-peer health care Tagged With: ALS, Alzheimers, chronic pain, cystic fibrosis, eating disorders, LongCovid, Matthew Trowbridge, ME/CFS, menopause, MIT Press, myalgic encephalomyelitis, peer health innovation, Rare Disease

Unrest

January 8, 2018 By Susannah Fox 1 Comment

Jennifer Brea, director of the film Unrest, lies in bed with EEG leads on her head

The film “Unrest” will debut on Independent Lens this week (check your local listings — in the DC area it will air on Jan. 12 at 10:30pm on WETA). I couldn’t wait and bought my own digital copy on Amazon. Let me just say: It’s no surprise that it’s on the short list for an Academy […]

Filed Under: e-patient stories, key people, patient networks, peer-to-peer health care, policy issues Tagged With: chronic fatigue syndrome, Jennifer Brea, Marfan syndrome, ME/CFS, myalgic encephalomyelitis, peer-to-peer healthcare, Rare Disease, rare diseases

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Recent Comments

  • Susannah Fox on Rare Disease in the NYT: “Captivated is such a good description of how I felt, too. I read the essay once through quickly, then a…” Apr 25, 11:12
  • Anonymousity on Rare Disease in the NYT: “I was captivated by Amanda Hess’s story. I too dove right in in reading all the way through the article…” Apr 25, 09:24
  • Susannah Fox on Rare Disease in the NYT: “Thank you, Dave! Yes, I’ve been a fan of Hess’s writing for a long time and now, well, I’m a…” Apr 23, 22:00

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