Psychological Non Epileptic Seizures
Northeast Regional Epilepsy Group

With all the exceptional research being conducted on PNES/NEAD, is this seriously the article that was chosen to be highlighted by the Epilepsy Foundation of America (EFA) in their effort to address the PNES topic?

A vintage portable black and white television with real static (not photoshop).

I remember like it was yesterday, while still a fellow in training, an attending doctor said: Lorna, when you start publishing in the future, make sure you don’t just publish noise. When I asked what he meant by that, he explained that too many articles published in scientific journals are just noise, static like on the radio, and that they have little or no value.

This week, I ran across an article on PNES that was highlighted in the Epilepsy Foundation of America’s weekly email. Of course, I was excited because exposure of PNES is so needed.  But as soon as I read it, I was saddened because in my humble opinion this article is one of those “noise and static” articles that I was warned about years ago.

Basically, let me just cut and paste their findings as reported in the EFA email and then translate. The study examined 37 patients diagnosed with PNES and placed them randomly into one of three interventions:

  • Intervention group 1: 12 patients who were told by their doctor about PNES and told to seek care in the community had no change in mood or quality of life.
  • My translation: So patients that were just given the name of the disorder: “You have PNES” and sent out to “seek help on their own” DID NOT IMPROVE. Wow, thanks for the newsflash. We never would have known that just sending a patient out with just a diagnosis and no explanation or better yet, referral in hand is not going to be helpful.
  • Intervention group 2: 10 patients who were given the diagnosis in a scripted manner and who received a psychiatry consult and written information had PNES less often after discharge. Self-reported quality of life improved also.
    • My translation: So when the diagnosing team went further than just stating “you have PNES” but instead 1) gave an explanation of the disorder, 2) the patient met with a psychiatrist and 3) were provided with an informative pamphlet to maybe show a future mental health provider, they had some decrease in their episodes and reported better quality of life.   Again, is this seriously groundbreaking news? And just a thought, shouldn’t the patient also be provided with an actual referral in addition to the little pamphlet?
  • Intervention group 3: 15 patients who received phone call follow-ups in addition to the scripted diagnosis, psychiatry consult, and written information did the best. They had less frequent PNES, improved self-reported quality of life, and improved mood.
  • My translation: Patients who got all that intervention group 2 got and then received a follow-up phone call by the diagnosing team did even better. By the way, the call consisted of asking how frequent their events were, patients completed depression and quality of life inventories on the phone and were asked if they had yet been evaluated by a mental health provider, sought a second opinion, visited an emergency department, or were admitted to a hospital for ongoing PNES events. Patients were also asked if they understood their diagnosis and believed their events would stop. So, in all honesty, the therapeutic component of these calls appears really limited and looks like a lot like data collection for research. I suspect that the patients may have responded better in this group because they sensed that these calls represented that they were not dumped by the diagnosing team and that the team was taking some interest in them.

 

And then the EFA goes on to analyze this study and to explain that one of the conclusions we can extract from this study is:

Since PNES are caused by or associated with psychological factors, simple strategies that can help mood are needed

My translation: What?! “Simple strategies that help mood are needed?” I don’t know what patients with PNES these authors are studying but most of the research in PNES unfortunately demonstrates astoundingly high rates of psychiatric comorbidities (depression, anxiety, personality disorders, post-traumatic stress disorder, etc.) in persons with PNES. Usually effective treatment of the psychogenic seizures and the psychiatric comorbidities that accompany them is intense and complex.

This is a very serious condition that brings much suffering to those who are affected by it. Please, I ask the scientific community, let’s not publish noise and static.

This is the title of the article in case you are interested in reading it: A standardized diagnostic approach and ongoing feedback improves outcome in psychogenic nonepileptic seizures

10 Responses to “With all the exceptional research being conducted on PNES/NEAD, is this seriously the article that was chosen to be highlighted by the Epilepsy Foundation of America (EFA) in their effort to address the PNES topic?”

  1. Melissa says:

    Can’t say I blame you if the article was as inept as the “snippets” above. Jiminnee!! Don’t we alot just a tad more time and value than that!! Ughhhh… This is why some have given up on the medical community at large.

  2. Eric Neldon says:

    Lorna,

    Are they serious ?

    I’m sure those of us reading this could put together a better study than this one, and with truer results.

    It’s very insulting that members of EFA medical community to do this.

    We have made such strides over these last few years, and to read this, is nonsense.

  3. Anna Havens says:

    As a graduate student and future clinician interested in working with people experiencing PNES, I look forward to perhaps contributing to quality, professional research regarding PNES. As an understudied disorder, PNES deserves a brighter spotlight. I urge the existing scientific community to publish better information for our communities and professionals.

  4. lianne says:

    Pretty accurate of the treatment for this disorder I’d say!

  5. Debbie says:

    I read this article before you blogged on it. My reaction was this seems like same old issues of dancing around SAYING what PNES is! Gee why is this so hard? The hard part is cutting through bias against mental health disorders and leading people to places of effective treatment methods. If follow up phone calls decreased the number of PNES, improved quality of life and mood I think this scratches the surface of what the long term outcomes of these interventions are. It takes a heck of a lot of work in therapy on the patient’s part to master living with PNES. I imagine these improvements were short term. This study gives people the wrong idea of what is needed long term.

  6. Patty Shafer says:

    Thank you for raising the important topic of talking about a diagnosis. The abstract that I wrote for epilepsy.com was about a published article in a peer-reviewed journal. While there are many important concerns about PNES, this article focused solely on telling the diagnosis. At the Epilepsy Foundation of America we are lucky to have a wonderful agreement with Epilepsy & Behavior journal to share open access to 2 articles a month. This gives people who do not have a paid subscription to the journal a chance to read these articles. While this topic may seem simplistic to some of you, it is a crucial one. How people are told about the diagnosis or not told and whether they receive referral for mental health follow up is very important. And there is no consistent approach to how this is done in the medical community. Studying this topic could help change this but is also hard to do. I look forward to more research about all aspects of PNES which can help improve care and lives for people with nonepileptic seizures.

    • Lorna Myers says:

      I appreciate this response from Patty Shafer who represents the Epilepsy Foundation of America about the article she and the foundation she works for chose to highlight. It is civil, professional and allows for a dialogue about science to take place. What a difference a day makes. On Friday before accepting my invitation to post a response on my blog if she was in disagreement, I received two emails from her that seemed angry and scolding. As I said in my response to her, I never meant any disrespect to either her or the authors but I have to be able to speak my mind. We all need to remember that we have the fortune to live in the United States of America and there is something called the First Amendment of the Constitution that protects my right to free speech. My blog is free speech and is an opinion. I have a professional opinion about this topic because I specialize in PNES and if I have an opinion to share on my personal blog, I am allowed to do so and I will do so.
      I continue to hold that the article the EFA highlighted in that particular email blast represents scientific static (there are 4 previous studies that have examined the utility of the scripted presentation of a diagnosis of PNES –see this article for a very well explained review of these and much more on PNES http://onlinelibrary.wiley.com/enhanced/doi/10.1111/epi.12106/) so this in particular is not new. In addition, it conveys a defeatist and complacent attitude that, in my opinion, is unhelpful to patients and their caregivers. I quote directly from the article: “Although formal treatment programs involving CBT appear promising based on a handful of preliminary studies, such programs are not available in most communities… Therefore, simple intervention strategies that could be implemented fairly easily without a large commitment of resources (e.g., using a structured method of delivering the PNES diagnosis, giving the patient a handout to reinforce the diagnosis, and using an inpatient psychiatry consultation to reinforce the diagnosis) are likely to provide benefit to a larger percentage of patients with PNES and may be helpful while they are awaiting more formal treatment options.” Rather than giving a patient a brochure to tide them over while they are “awaiting more formal treatment options,” I urge those who work in epilepsy centers to do a better job and give the patients or help them find a proper treatment referral.
      I invite dialogue and debate about any one of my blog posts. You don’t have to like what I have to say, but please let’s keep anger and hurtful comments out of here and let’s maintain our dialogues at a professional and civilized level.

  7. A. Douglass says:

    It is sad how basic they make it seem, like here you go it’s not true epilepsy so no worries. That is how I felt when I got my diagnosis ike it’s no biggy,you’ll get over it. I mean after a year of struggling with a sudden onset of seizures that literally turned my life upside down I was exhausted and at the end of my rope. I was treated disrespectfully by supposed professionals. I mean I broke down I wasn’t necessarily relieved that it was NES. Then to just get a pamphlet about it. Really doc!!?? So thanks for having the passion to bring this up as an issue. I have since got counseling, but my seizures didn’t stop completely so my PC put me on meds and that has helped a lot! I still go to therapy and believe in the process, but there needs to be more awareness and better procedures when handling patients like us.. I apologize if this wasn’t the forum for sharing that.

  8. Chris Ditunno says:

    Wow… I can’t believe how many providers (and national organizations) are still living in the dark ages when it comes to PNES. If you need any more of it, I’m more than happy to share my personal experiences. I have a J.D. and a M.P.H. from Harvard in public health – I thoroughly understand my legal rights and how to do medical research and self-diagnosed my PNES a few years ago – and I’ve been involuntarily committed, restrained (handcuffed) and sedated at the ED of a major teaching hospital, told I was “faking it” and “having a temper tantrum” by professional training inpatient psych staff at prestigious medical centers. You name it, I’ve probably lived it in the last 5 years. This is SO important for those of us living with this disorder and our caretakers. It can mean the difference between a dismal versus good prognosis. I’m happy to contribute to getting the word out and providing professional and respectful criticism of any medical professionals who continue to disseminate this kind of misinformation. Thanks for all that you do to support us and those who love us.

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