This feature article was just published by the International League Against Epilepsy (ILAE) and summarizes meetings that took place last year.
Note: I will continue to call PNES by this name below since we do not have a better term yet.
Why is this important what we call this disorder, you might ask?
In summary, the name we end up using has important implications (for patients (since it is your health condition), for how others perceive those patients (family, friends, bosses, teachers, doctors, etc.), and even things we don’t think about that much: keeping neurologists involved in the diagnosis process, making sure reimbursement for testing is guaranteed, and research funding.
It is also important to have a unified term to avoid confusing patients and others. Right now, someone may not know that when they say they have PNES, this is the same as saying that they have “dissociative seizures” for example. Psychotherapists may also be unaware of these many terms and turn patients away. And if we ever try to set up a foundation or put together a public education initiative, we need to be very clear on what name we use, or our efforts will be watered down.
When you read this article, you will see that “psychogenic” is debated, “non-epileptic” is debated, and even “seizures” are debated.
As for the use of the word “seizure,” I have never found it problematic. The episodes look like seizures, feel like seizures, and patients are quite capable of understanding that they are not epileptic if this is clearly explained. So, I disagree with this idea of having to do away with “seizures” in the name. It would be great to hear your thoughts on this debate.
As for “psychogenic,” ten years ago, I published one of my first blog posts (Psychogenic, pseudo, psychological: why does PNES have so many names? | Non Epileptic Seizures) in which I mentioned that some patients disliked the term because “psycho” reminded them of the Hitchcock movie and other negative connotations. Way back then, I had proposed changing “psychogenic” for “psychological” but now I realize that may not be the best option. Ten years have taught us a lot, and possibly the best term might be one that describes the underlying mechanism (as “psychogenic” sought to do “generated by psychological factors”) that extends beyond psychological factors and includes physical triggers as well (pain, exhaustion, hunger, thirst, etc.) which are also known to trigger PNES. In other words, perhaps we need to include in the name something to do with this being an interoceptive disorder.
We need to have a name that is clearly representative, acceptable to all parties, and that can be prominently displayed to start making inroads everywhere that change is needed. Right now, the multiplicity of names being bandied about weaken the community, confuse patients and clinicians, and make it ever so hard to educate the public. We need to be very clear before we take any more steps in the direction of changing a name because we run the risk of losing the progress we have achieved so far in educating the public and health providers using the term PNES (in replacement of the term “pseudoseizure”).
Perhaps we should hold a meeting that includes not just professionals like those who were at the webinar in this article but also patients who wish to voice their position/experience? Perhaps a brief explanation of the debate and an online survey? Any other ideas?