Meet the new Executive Director of FND Hope USA

There is so much that we need to do to improve the lives of those living with PNES.  We definitely need to increase treatment options and to ensure a growing number of clinicians are available to treat this health condition.  To achieve this, research on treatment outcome is a necessity, and as such, funding is required. Until now, clinical trials have been conducted on relatively small samples [except for a...

Recommendations for summer reading: a variety of choices about and by persons living with Psychogenic non-epileptic seizures (PNES)

Psychoeducation: refers to some form of intervention (lecture, support group meeting or published materials) that aims to educate the audience members/readers about a specific health condition, provides coping suggestions and informs about treatment options.  Usually, psychoeducation is provided by health professionals but not necessarily; patients who have educated themselves about their health issues can prove...

As someone who has PNES, what should I know about the COVID-19 vaccines?

If we can say anything for sure about COVID-19 is that there is still a lot that we do not know. Making matters worse, at times experts have communicated confusing and contradictory information to the public. One of the clearest examples of these confounding messages can be found in the advice provided regarding mask wearing.  In March of 2020, experts on news outlets were saying “definitely, do not wear a...

The debate on what to call psychogenic non-epileptic seizures (PNES), non-epileptic attach disorder (NEAD), dissociative seizures, functional seizures, etc. continues

This feature article was just published by the International League Against Epilepsy (ILAE) and summarizes meetings that took place last year. https://www.newswise.com/articles/what-should-we-call-psychogenic-non-epileptic-seizures   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...

Psychogenic, pseudo, psychological: why does PNES have so many names?

Does it matter what we call PNES? In Shakespeare’s Romeo and Juliette, she said: What’s in a name? that which we call a rose by any other name would smell as sweet… Similarly, as kids we were taught: Sticks and stones may break my bones, but names will never hurt me. What do these two statements mean?  That what you are is what matters, not what you are called, that words are not powerful.  But actually,...