My main contact at the NAEC is Ellen Riker, their Executive Director. I have been in contact of and on with her and David Labiner, MD, their President for a couple of years now. My goal has been to help them understand the importance of helping those with PNES to find the treatment they need through the NAEC member epilepsy centers. These centers see a large number of people with PNES each year and are responsible for providing a comprehensive treatment plan for them. This is, unfortunately, not always happening. When someone has a seizure they often seek help at an epilepsy center. They are sometimes misdiagnosed as having epilepsy rather than PNES. This leads to long periods of time where anti-epileptic drugs are tried without success.
Ellen Riker has told me that the NAEC is planning to update their website later this year. She refused to add a link to my Facebook page or my book on Amazon. There are reasons for this that are similar to other organizations not doing so that include the fact that I’m not a physician, etc. The fact that I am a PNES survivor’s husband who has monitored and written about every aspect of her seizures for over 20 years should be of great value to them. They, like others, have been reluctant to connect with patients and share our stories and insights. This is a major failing of professional groups in my opinion. Especially with PNES, it is patients who often have much greater knowledge then epilepsy professionals.
They are also working on a plan to get an initiative going with a professional who is a top expert in PNES to provide training for neurologists in PNES care. It’s going slow and their goal is to train two people per year at their centers. This is desperately needed and yet I have heard of no specific progress at this time. Hopefully they will see this as a doable goal and will let us all know which centers will be ready to provide these resources.
Oddly enough they are very opposed to using Facebook or other social media to promote their work and resources. The reason? They don’t have experience with using these tools. I told them if they are concerned about helping those with PNES they should follow other group’s example, especially that of Lorna Myers’s Northwest Regional Epilepsy Group. There is no finer website than theirs.
During my last conversation with Ms. Riker she said that they (the NAEC) are “on the same page” as we are. This is not true. With respect, they have not done anything really tangible to help those with PNES. They have stated their plans and have given themselves no deadlines to meet. I do hope that they make strides but I’m not confident. If they are not going to reach out to those with PNES through social media or through linking mine or Lorna Myer’s books than what more are they really willing to do?
I am calling on the NAEC to follow through with their goals of updating their website to include more links to sites and books that can help PNES sufferers and to complete their plan to provide training to their centers. We with PNES and the loved ones who are caring for them can no longer wait.