My frustration with NAEC
After almost 5 years of effort, delays, being ignored, what do we have now that’s different from when I began to talk with them – Nothing. Here's the timeline.
June 18, 2013...
My first contact with Ellen Riker, the Executive Director of NAEC. This was after my conversation with Phil Gattone, the President and CEO of the Epilepsy Foundation. He encouraged me to contact NAEC.
July 10, 2013
I was able to get a conference call with Ellen Riker and NAEC President David Labiner. During this call they asked me to submit the PNES support/business plan that I had told them I had created. They asked me to send it the first week of September, which was a few weeks before their board meeting.
September 3, 2013
I submitted my PNES support/business plan. Ellen Riker promised to reply in a couple of weeks.
October 3, 2013
Conference call. David Labiner said he would “take it to the next level” and asked me to secure three physicians to act as my advisory group. Also asked for a revised business plan to include many other items that they needed to be addressed.
October 10, 2013
I got three physicians for the advisory group. Selim Benbadis, Curt LaFrance Jr. and Brien Smith. Submitted revised business plan.
December 3, 2013
New conference call scheduled for December 30th.
December 30, 2013
Our plan rejected. They said NAEC will be taking steps internally “very soon” to address PNES. Said they would report back to us so we could report to our patient contacts.
January to December 2014
Repeated requests for update. Heard nothing from NAEC
February 9, 2015
Ellen Riker finally contacted me back. Said an agreement with Curt LaFrance Jr. was in the works for the use of his training on PNES patient care.
February 17, 2015
Ellen Riker states NAEC plans to update their website “later this year”. Promises to take my suggestions about PNES to the board. Never heard anything from them. They confirmed that they have not finalized an agreement with Curt LaFrance Jr. To my knowledge nothing ever came of this.
March 2, 2015
Emailed Ellen Riker and notified her that I intended to share all updates, or lack of them, on my Facebook page as a service to all who are desperate for help. My hopes were to inspire them with the knowledge that they need to help out.
March 11, 2015
Call with Ellen Riker. Nothing happening yet.
November 20, 2017
Emailed Ellen Riker about having our PNES resources handout available to the NAEC centers and for links to be provided on their website. No reply.
January 18, 2018
Called and talked with NAEC representative who said they would forward my email to Ellen Riker again.
February 22, 2018
Reply finally. The board of directors will consider our request.
April 5, 2018
Our request is rejected. See my separate post.
National Association of Epilepsy Centers (NAEC)
The NAEC has decided yet again to not post links from their website to our Facebook page or to the website of Lorna Myers, Ph.D. Please see their letter below.
A long time ago we were frustrated by the lack of an affirmative statement by professionals about the fact that PNES are not "voluntary" in any way. Some of us are accused of being in control of or even faking their PNES. It took a while but I worked with the Epilepsy Foundation many years ago and received this statement. See the text I highlighted in yellow.
30% Have PNES, not Epilepsy
Around one third of all people who visit epilepsy centers are ultimately diagnosed with Psychogenic Nonepileptic Seizures (PNES). Think about that statistic. And here is another statistic. The average time between a mis-diagnosis of epilepsy and PNES is 7 - 10 years but can be even longer! This is unacceptable of course, especially with the vast knowledge of PNES we have now and very reliable video EEG testing.
The average epilepsy center has little or nothing on their websites about PNES. Why is this? How is it that information on something that a large percentage of their patients have does not appear on their site?
Common PTSD Causes Resulting in PNES (additions welcome)
Sexual abuse in childhood
Emotional abuse in childhood
Physical abuse in childhood...
Death of a parent in childhood
Near death in adulthood due to combat situations
Near death due to car accidents in both childhood and adulthood
Any traumatic event, especially in childhood, that has a real or perceived threat to life
My wife, who worked so hard to overcome her PNES, has realized that there should be no confusion when it comes to the description of these seizures. She told me this morning that they should be called “Trauma Seizures”. This is due to her experience as well as trauma being the most common origin of PNES.
I have written that there is an effort to downplay the severity of PNES by some. They wish to call them “events”, “episodes” “spells”, etc. They are none o...f these. They are caused by trauma, and as such should be known for that. Let’s all keep the truth going.
No more downgrading of PNES into something it is not. It may make it easier for treatment providers to do so, but it doesn’t help those who suffer from PNES, which is a result of trauma.
There are still professionals who support the idea that PNES, or Trauma Seizures, are either voluntary or due to a lack of "coping skills" or even fake.
Only the truth is what is important.
The National Association of Epilepsy Centers (NAEC) has responded
Ellen Riker responded to my final email attempt, which is good news. It was going to be my final attempt before I took other steps to reach out to the individual centers in a new campaign. Please see her email response below and my response to hers.
Ellen Riker’s email response:...
I apologize for not getting back to you sooner. Jen did tell me about your call and forwarded your email to me in January. I appreciate your email from yesterday and your specific requests, which I will forward to the NAEC Board.
The NAEC Board did review your request from several years ago to post your handout and link to your website. Your request sparked a good discussion and exploration of training programs and other activities related to non-epileptic seizures occurred. We appreciate your continued interest and I will bring your email to the attention of the NAEC Board, which meets in March. At that time the Board will decide whether to add information to the website on non-epileptic seizures and will fully respond to your questions.
National Association of Epilepsy Centers
600 Maryland Avenue, SW
Washington, DC 20024
My response to her response:
I accept your apology, and would ask you to pardon me for my frustration. It can be very difficult for patients and advocates to not receive prompt replies, even if they are not the ones hoped for. Your association and member centers are uniquely positioned to help PNES survivors due to your being the usual first point contact and diagnosis. This is the reason for our continued interest in your participation.
We look forward to hearing from you after the Board meets. We are hopeful that they will agree to this opportunity to make a huge impact in PNES information and treatment options being more available to all.
Thank you very much,
Very touched by Alanna Sterling's experiences with PNES and childhood trauma. (Thanks Lorna for the link)
National Association of Epilepsy Centers (NAEC) Update
I have made a final attempt to get a response from the NAEC. It’s frustrating that the group that can do so much to get the word out and share our resources has decided to ignore us. I would have at least hoped for a reply that they were not interested in helping us versus being ignored. Patients and their advocates never deserve that, and it makes me suspicious that there may be some negative motive behind it. If not, then why the lack of support.
People are suffering and worried and confused and need to better understand PNES and what treatments are available. I’m calling on the NAEC to join with us now and provide our resources for the up to 30% of their patients who end up being diagnosed with PNES.
Emergency Rooms and Verbal Abuse
When ER personnel accuse you of faking your seizures or not properly controlling them from happening or any other such nonsense, this is actually a form of verbal and emotional abuse. If you like, please feel free to let me know who they are and where they work so that I can send them our PNES information handout. I will NOT at all get angry with them or reveal your name.
You can also do this yourself. Check out the resources handout information under “Notes” in the side bar of this page. Either way, we need to contribute to stopping this from happening, which it still does often.
PNES are a symptom of a disorder. The disorder is usually PTSD but can also be dissociative disorder or conversion disorder. The disorder is caused by extreme trauma. PNES are produced as a protective device, to help us when the pain is too great and life threatening. When the trauma/abuse stops or ends, the ungrieved pain is stored inside. At some point later, sometimes many years later, the unresolved trauma, due to specific triggers, appear again in the form of flashbacks (traumatic memories). Once again, the PNES are used to protect us, but this time from flashbacks which are very realistic vs. actual trauma. Therefore, the treatments for PNES are those that are used in treating PTSD.
Patients Have Knowledge That Professionals Don’t
***The Mount Everest Test
Answer all five questions to see why professional treatment providers need to value their patient’s knowledge. See how you do and I think most will see my point when you get to question #5....
Is it cold at the summit of Mt. Everest?
Is there a dangerous lack of oxygen present at the summit of Mr. Everest?
Is Mt. Everest located in a country other than the United States?
Should you have some general training in mountaineering before attempting to climb Mt. Everest?
What feelings did you experience when you reached the summit of Mt. Everest?