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.
Medication, Polypharmacy and FND: What the Research Reveals and What Remains Unanswered
FND Nope
Moderator
A study of 322 motor FND patients documented extensive medication prescribing, substantial polypharmacy and concerns about potential iatrogenic harm. Beyond the numbers lie important questions about adverse drug effects, diagnostic reasoning and whether subsequent research has adequately addressed these risks.
The MRI Was Normal. The Lesion Was Still There.
FND Nope
Moderator
Studies using 7 Tesla MRI have uncovered neurological lesions missed by conventional scans, sometimes confirmed through surgery and pathology. So how much confidence should clinicians place in a normal MRI, and what happens when they decide patients do not need imaging at all?
When Everything Looks Functional: Ten Claims, One Convenient Diagnosis
Quackademic
ME/CFS? Stop pacing. Long COVID? Think functional. POTS, MCAS or CCI? Perhaps FND. We examine ten controversial public statements from an FND-specialist physical therapist, the evidence behind them, and the potential consequences for patients.
Before You Criticise FND, Apparently You Must First Prove You're Not a Terrible Person
FND Nope
Moderator
Polly Patterson questioned FND diagnoses in post-viral illness, carefully explaining that she wasn't dismissing patients or denying their suffering. FND Action's Kim Hearne responded with a nine-part critique. The exchange reveals how easily legitimate questions about medical practice become arguments about compassion, credibility and stigma.
Marion Brown: Challenging the Misdiagnosis of Antidepressant Withdrawal as FND
FND Nope
Moderator
Marion Brown, a retired Scottish psychotherapist and friend of this website, has spent years exposing how antidepressant withdrawal and adverse drug reactions can be overlooked, dismissed, or misdiagnosed as Functional Neurological Disorder and medically unexplained symptoms. We examine her research, parliamentary advocacy, and the patient experiences behind her work.
When Lyme Disease Symptoms Persist: What Do We Actually Know?
FND Nope
Moderator
Lyme disease can have lasting consequences, but persistent symptoms do not necessarily mean persistent infection. We examine untreated infection, reinfection, treatment limitations, PTLDS and the difficult questions raised when patients with unresolved neurological symptoms receive an FND diagnosis. Drawing on published research, patient accounts and discussions on FND Nope, we also explore how clinical terminology can obscure rather than clarify diagnostic uncertainty.
When Drug-Induced Neurological Damage Gets Labelled FND
FND Nope
Moderator
Psychiatrist David Healy challenges the use of FND diagnoses in patients experiencing persistent medication-related neurological symptoms, warning that drug toxicity can be overlooked, patients dismissed and potentially harmful treatments repeated.
Periodic Paralysis: Another Neurological Disorder Mistaken for FND
FND Nope
Moderator
A reader highlights how children and adults with periodic paralysis, a recognised neuromuscular channelopathy, can be labelled with FND or anxiety instead. Medical literature confirms the diagnostic risk, including cases where appropriate testing identified a treatable disorder.
Genetic Testing Can Miss Rare Neurological Diseases: European Experts Expose Diagnostic Gaps
FND Nope
Moderator
European experts have identified major inconsistencies in genetic testing for rare neurological diseases. Some conditions can produce unusual symptoms that resemble FND or other disorders, while existing tests may fail to identify their genetic causes. New recommendations aim to improve diagnostic accuracy.
Christina Applegate's MS Diagnosis Was Wrong. Five Years Later, She Still Has No Answers
Quackademic
Christina Applegate reveals that doctors have withdrawn her multiple sclerosis diagnosis after five years of debilitating symptoms. Her disability remains, her condition has reportedly worsened, and the search for an explanation starts again. The case raises questions about neurological misdiagnosis and the danger of replacing one incorrect diagnosis with another.
