Patient Advocacy
This tag is about Patient Advocacy: supporting patient voices, rights, and effective partnerships with doctors in complex and chronic conditions.
State Rep. Tricia Byrnes Is Looking for the Filmmaker Who’ll Investigate FND
Facebook Stories
Social media
Missouri State Rep. Tricia Byrnes is seeking a filmmaker to investigate Functional Neurological Disorder. She says hundreds of families report children were labeled with FND before doctors fully checked seizures and loss of mobility, and that second opinions were blocked.
Maddie Aumann: From an FND Diagnosis to Maddie’s Law
FND Nope
Moderator
Maddie Aumann was diagnosed with FND before genetic testing identified a rare SCN9A disorder. Her mother, Christine Aumann, describes how the FND label continued to affect Maddie’s care even after that discovery, ultimately helping inspire Maddie’s Law.
FND: New Name, Same Old Problems?
FND Nope
Moderator
FND is celebrated as an area of medical progress, but how much has actually changed? Historical research reveals continuity with hysteria and conversion disorder, while modern diagnostic uncertainty and limited treatment breakthroughs raise questions about whether institutional recognition has outpaced meaningful progress for patients.
From PNES and Suspected FND to C1 Paralysis: Amy Wang-Hiller's Story
Facebook Stories
Social media
Violinist Amy Wang-Hiller describes how suspected FND, a PNES diagnosis and repeated psychological attribution allegedly delayed recognition of tethered spinal cord, cervical instability and progressive paralysis.
Two Years Diagnosed With FND Before Autoimmune and Genetic Findings Emerged
Reddit Stories
Social media
A Reddit user reports spending two years diagnosed with FND and anxiety before investigations reportedly identified autoimmune and genetic neurological conditions. Their experience raises questions about overlapping symptoms, diagnostic closure, and why complex presentations may be interpreted as functional.
AI Helped Diagnose a Rare Disease. Why the Warnings?
FND Nope
Moderator
After parents used ChatGPT to identify their daughter's rare genetic condition, a BBC report emphasised the dangers of AI-assisted diagnosis. But what happens when conventional medical care overlooks the possibilities that AI can help uncover?
Jo Puckett's FND Story in the Daily Mail: Questions Worth Asking
FND Nope
Moderator
A Daily Mail article about Jo Puckett's experience with FND raises questions about diagnostic certainty, psychological distress, medical dismissal and the difference between wanting answers and wanting to remain ill.
My daughter
I would like to share my daughter’s story and what Functional Neurological Disorder has done to her life over the past three years.Before FND, my daughter was a creative, talented teenager who loved music, performing, makeup and hair. She had dreams for
Why We Share These Stories
FND Nope
Moderator
Why FND Nope shares patient stories, diagnostic reversals and clinical cases: not to win an argument, but to preserve uncertainty, uncover possible clues and keep doors open when people are still sick.
Janet Dafoe on FND: "Where the Sun Don’t Shine"
X stories
Social media
ME/CFS advocate and psychologist Janet Dafoe has criticised psychosomatic explanations of poorly understood illness for years. In 2026, that criticism turned directly to FND, raising questions about diagnostic certainty, ME/CFS, Long COVID and what happens when uncertainty becomes a diagnosis.
If FND Is Not ‘We Don’t Know’... What Exactly Do We Know?
FND Nope
Moderator
What do we actually know when we diagnose FND? A look at the epistemic limits of the diagnosis, the danger of treating unknowns as knowns, and how overstating certainty can contribute to diagnostic overshadowing and undermine advocacy.
When Nursing Education Reinforces a Diagnosis
Quackademic
Does this nursing guide teach observation, or does it teach reinforcement of a diagnosis? A critical examination of how skepticism, alternative diagnoses, and diagnostic uncertainty are presented to nursing staff.
