New International Research Project for persons living with PNES (NEAD)

Six months ago, Prof. Markus Reuber and one of his doctoral graduate students launched a research study in which patients diagnosed with PNES and epilepsy were invited to participate in a writing experience that tested whether this helped them feel more in control of their condition and reduce their seizures and improve their quality of life.

Now, Dr. Catherine Robson and Prof. Markus Reuber are launching a second study which involves filling out an online survey and is meant to give patients with PNES a platform in which their voices and experiences can be heard.  This study is being run out of Great Britain but they are especially looking for international participants because they are interested in understanding the life experiences of persons living with PNES from all over the world.

You are able to take part in this survey if you are over 18 years of age and have been told that you HAVE or MIGHT have non-epileptic seizures (PNES or NEAD). You can also take part if you have a dual diagnosis of epilepsy. We want to include as many of the PNES and NEAD community as possible.

Who is Prof. Markus Reuber you may ask? He is a Professor of Clinical Neurology at the University of Sheffield, Honorary Consultant Neurologist at the Sheffield Teaching Hospitals NHS Foundation Trust and Editor-in-Chief of the Seizure European Journal of Epilepsy and is a very powerful voice in the field of PNES or NEAD as they call it in England. His publications on the topic of PNES are of exceptional quality and many are truly ground-breaking.  You can read more about his work here: https://www.researchgate.net/profile/Markus_Reuber

And who is Dr. Catherine Robson?  A rising researcher who has a growing body of first-rate research in PNES or NEAD.  You can read more about her work here: https://www.researchgate.net/profile/Catherine_Robson2/publications

Information about this new study

8-12 volunteers are NEEDED for an international “non-epileptic seizures” (PNES and NEAD) survey (PILOT or TRIAL phase).

Core research team: Dr. Catherine Robson, Prof. Markus Reuber, Dr. Lorna Myers, Dr. Chrisma Pretorius, Prof. Olaug Lian.

Mission: to share the experiences of people living with PNES and NEAD with the medical community and beyond.

You can fill out the survey here:

http://www.smartsurvey.co.uk/s/LIVEListeningtopeoplewithnonepilepticseizures/

You can join the project’s Facebook page here:

https://www.facebook.com/Listeningtopeoplewithnonepilepticseizures/

Please like/follow the page for updates. We aim to launch the official survey by the end of the month. The project has full Research Ethics Committee approval.

You are able to take part in this survey if you are over 18 years of age and have been told that you HAVE or MIGHT have non-epileptic seizures (PNES or NEAD). You can also take part if you have a dual diagnosis of epilepsy. We want to include as many of the PNES and NEAD community as possible.

If you have any questions, please email Catherine at catherinemaryrobson@gmail.com. Or you can message Catherine through the Facebook page listed above.

If lots of people respond, 12 trial participants will be randomly selected and Dr. Robson will keep your email address on file to send you a link to the official (launch) survey in a couple of weeks.