A recent ILAE Task Force proposal (Hingray et al., 2025) recommends replacing the term “psychogenic nonepileptic seizures (PNES)” with “functional/dissociative seizures (F/DS)” arguing that some experts feel that PNES lacks acceptability and that many patients reject it.
Which Experts?
It is unclear what experts the authors are referring to since the Task Force did not consult with any psychological or psychiatric organizations which is where treating clinicians are found. Instead, they mention that the National Association of Epilepsy Centers (NAEC) and a patient advocacy group (that is not specifically focused on PNES), FNDHope.org were invited to participate in this project. Furthermore, the claim that experts feel uncomfortable or reject the term “psychogenic” is actually countered by the authors themselves when they reference a global survey (Asadi-Pooya et al., 2023) that found that most clinicians treating these patients continue to utilize “psychogenic” as the preferred terminology and conceptualization of the disorder.
Do patients really reject it?
As for the claim that many patients reject PNES, I did not see any patient survey referenced in the proposal. I would like to bring up a survey conducted on www.nonepilepticseizures.com, which is a site visited by many patients and family members. A survey on the homepage asked: do you prefer to call your condition: 1) functional seizure, 2) psychogenic nonepileptic seizure, 3) dissociative seizure, 4) stress seizure? Out of 262 votes, 24% voted for functional seizure, 51% for psychogenic nonepileptic seizure, 17% for dissociative seizure and 8% for stress seizure.
I would argue that many of my colleagues who are psychologists and psychiatrists and are experts in treating PNES (not diagnosing it), do not have an aversion to the term PNES. In fact, they feel that it is necessary to retain the word “psychogenic” mainly to ensure that the patient understands the condition and the appropriate treatment they will need.
Are we at risk of confusing patients and other professionals even more?
My colleagues and I are very concerned that advancing this change without broader consultation from psychiatric and psychological professional bodies may lead to unintended negative effects. Primarily, that patients will fail to understand why appropriate treatment for their seizure disorder is provided through tailored PNES psychotherapies (especially when most diagnosing neurologists don’t even provide patients with a proper referral). Also, to ensure that patients don’t misunderstand and pursue continuing neurological care or other “physical treatments,” such as physical therapy for example. The latter is used appropriately for continuous functional symptoms such as limb paralysis or weakness but not for discontinuous symptoms such as seizures.
Does science censor positions before they have been examined from all sides and debated?
Lastly, many of us consider that adoption of this new terminology has been rushed, largely driven by a small group of influential voices involved in both FND advocacy and journal leadership. As a result, the change appears top-down, rather than arising from broad democratic consensus of patient-centered clinicians and patients themselves. In fact, a group of us sent a letter to a journal editor with our concerns and the editor refused to publish it. The wording of the rejection indicated that the decision to move forward with this name change is a done deal and that there is no interest in entertaining other perspectives or valid concerns despite the fact that the proposal was supposed to be a proposal not a mandate. We believe that there is a risk that voices in the field of psychiatry and psychology are being censored. Instead, a small group is choosing to push through an opinion as a mandate. It is the exact opposite of what a scientific community should be espousing.
More to come…
There are a number of other concerns that arise from this name change proposal including the belief that by changing the name of the disorder, the stigma of that which is “psychological” can be avoided.
Comments and questions are welcome! I hope that we approach this important topic through civil debate giving space to all opinions before moving forward. I say “no” to censorship” and “yes” to “free speech” and scientific debate.
I can see both sides of determining which name to use.
PNES clearly states the seizures are nonepileptic, which should appease the neurology community who feel the word “seizure” should be reserved for epilepsy. However myself and patients I’ve met in the seizure monitoring unit feel the term “psychogenic” leads some to believe we’re mentally impaired. In my experience, and theirs, the stigma surrounding a term which points to psychological issues translates to a “mental” deficiency, that we’re unstable or not quite all there.
And yet functional seizures are also confusing to those unfamiliar with FND and the various symptoms. When hearing the term functional one assumes something is working, not dysfunctional.
The typical analogy used to explain these is a software problem inside the brain. A miscommunication between the hardware and software which causes a “glitch”.
Whereas PNES is caused by emotional stressors which overwhelms the brain to a point where it forgets how to work properly.
Both explanations are received well and understood by most.
My position on this is I use both terms. I use functional seizures when speaking with my neurologist and the patients I visit in the seizure monitoring unit (I’m a peer volunteer).
I do this so not to confuse the patient. They receive the diagnosis from a neurologist who now use the terms FND or functional seizures, but once referred to a psychologist, most will use PNES, at least here in Canada and the US.
To be honest, I don’t believe there’s one term that will be acceptable to both neurology and psychology as there’s positive and negative connotations to both. What it should boil down to is what the patient is most comfortable with.