Patient Stories & Resources
Feature Story
ChatGPT Diagnoses Child with CCJ Issues, Chiari & Tethered Cord
Alex was 4 years old when he began to experience chronic pain. His family saw 17 doctors before they decided to use ChatGPT to investigate the source of his pain. The AI platform led to a diagnosis of Chiari and Tethered Cord.
EDS Patient Stories
EDS patients’ struggle to receive adequate care
This article details the state of care for patients with EDS in Canada. Patients often wait 2 to 4 years in line for neurosurgery, which sometimes never comes to fruition at all.
Scientific paper on joint hypermobility
Researchers from multiple institutions explain recommended screenings, assessments and management for EDS.
A mother and daughter’s personal journey to receiving an EDS diagnosis
This CNN article outlines a teenager’s story in receiving an EDS diagnosis, and calling for a start to researching treatments.
ME/CFS Patient Stories
Jennifer Brea’s Story
A Harvard Graduate, Jennifer Brea started experiencing ME/CFS symptoms and searched for a cure. Read her success story below.
UNREST documentary
This award-winning documentary follows Jennifer Brea as she discovers the reason behind her debilitating symptoms. Watch her film below.
MAID and patients in poverty: “No other choice”
IAmMadeline was an actress and playwrite–until chronic illness left her unable to work. This article explores Madeline’s story as an example of what so many patients are going through, including the financial burden of chronic diseases which prevents proper access to treatment.
ME/CFS and CCI connection
A 37-year-old woman from the UK documents her rapid health decline following a viral infection several years ago. Read about the connection between her ME/CFS and CCI below.
Long COVID and ME/CFS fatigue
Ed Yong, author of I Contain Multitudes and winner of the Pulitzer Prize, describes the daily experience of people with chronic fatigue.
Other Resources
Health Rising
Cort Johnson, an ME/CFS patient, founded Health Rising and has blogged since 2010. His site is one of the most visited websites devoted to ME/CFS future medical advancements.
For example, this upcoming two-drug clinical trial is discussed (2023).
Lyme Patient Stories
The CDC recognition of complex chronic illness including Lyme
President of LymeDisease.org details the CDC’s announcement of chronic infections.
Other Resources
Generation Lyme
The volunteer based online platform for patients, committed to inclusivity. Weekly meetups provide a safe space for patients in need.
Focus on Healing 