Empathetic Reformers?
The doctors leading the recent push to rename PNES—most visibly in the 2025 ILAE Task Force proposal for “functional/dissociative seizures (F/DS)” and the American Academy of Neurology’s 2025 guideline that settled on “functional seizures”—often frame the change as patient-centered and anti-stigma. They claim that the word “psychogenic” makes patients feel blamed, that it ignores the clear neurological expression of the symptoms, and that a more neutral term helps people accept that “it’s not all in your head.” I believe these clinicians see themselves as empathetic reformers, in contrast to the old “psychogenic” school that supposedly focuses too much on psychiatric comorbidities.
An Overcorrection?
I respect the intent. Stigma around PNES is real and harmful. But the solution being adopted is overreaching in prioritizing body over mind. It is an over-correction that excises any mention of the psychological entirely. In practice, many neurologists have already dropped the “dissociative” part of the proposed F/DS label and default to the sanitized “functional seizures.” The pendulum has swung from one extreme to the other, and patients are yet again drawing the short straw.
A Perfect Way to Avoid an Uncomfortable conversation?
I’ve been wondering why this movement caught on the way it has and has received full-throated support from FNDS, ILAE, and AAN followed by doctors all around the country. A doctor honestly shared with me last year that she was often uncomfortable with mentioning “psych” in her delivery of the diagnosis. She was wary of upsetting the patient, of being out of her comfort zone, of feeling insecure with follow-up questions, and most importantly, knew that she had no actual referral to provide the patient (yes, this keeps being the norm despite www.nonepilepticseizures.com which has a dedicated page for referrals and www.psychologytoday.com that also has therapists who specialize in dissociative and post-traumatic disorders).
Is a Brain Network Disorder Really Treated with Psychotherapy?
For the past year, I have been calling for a measured and thoughtful consideration of unintended consequences of this terminology change. For one, it collides with reality when we ask how will these neurological and not at all psych patients be treated then? The uncomfortable answer: With psychotherapy?! But how is that possible? It challenges the position of let’s sidestep mentioning anything about psychological etiology or risk factors and focus on the brain network disorder explanation.
If it’s Functional, Maybe We can Treat It Like Any Other Functional Neurological Disorder
Unfortunately, the answer some of my colleagues and I have observed is that some of these doctors are increasingly lean hard on the word “functional.” Lazy logic leads to concluding that if other functional neurological symptoms can be managed with physical rehabilitation, the logic goes, then so should functional seizures. And if you think this isn’t happening, I have a handout that was provided to a patient who was diagnosed with PNES-only (no other FND symptoms) and in it, the only treatment recommendation was “physical therapy and rehabilitation” as well as “various tricks [their words, not mine] to reinforce and stabilize good periods.” And then, almost as an afterthought in the last paragraph, the handout mentioned that some non-pharmacological treatments are “being investigated” including biofeedback, progressive muscle relaxation, CBT, and DBT…
Good Intentions, Harmful Results
I fear that the functional seizure movement is risking the creation of a more muddled care pathway in which PNES patients are now sometimes being referred to unvalidated treatments. I also predict that when those referrals inevitably fall short, frustration will mount on all sides and again, PNES patients will be worse off. Rash changes without the proper education of all stakeholders do not represent progressive medicine; rather it poses a potential disservice to patients living with PNES.
Professional Stigmatizing Attitudes = Promotes Stigma in the Public
The uncomfortable truth is that stigma does not live only in the patients’ and the public’s minds. It lives in the attitudes of the very professionals delivering the diagnosis. When doctors signal that words that refer to something psychological are stigmatizing, that psychological factors are embarrassing, or best left unmentioned, they transmit their own discomfort to the patient. That discomfort becomes the patient’s new stigma.
Check Your Own Bias First
I urge the field to examine how doctors are being educated about psychogenic conditions and psychiatry as a whole. How much of their own bias and stigma is being passed on to patients and will changing from “psychogenic” to “functional” help or further cement the stigma of mental health and illness?
Professional Stigmatizing Attitudes = Perpetuated Popular Stigma