Depersonalization Support Forum banner

Chicago Conference Update and NODID Research Update

2048 Views 9 Replies 4 Participants Last post by  DaZeDaNdCoNfUsEd

The update is also available in PDF format: (There is an error in this document, and that the papers that are listed in the referenced research section should read that the paper from Psychiatry Research will be the first paper and presented during the Sunday panel discussion, and the paper for the Journal of Clinical Psychiatry will be presented on Monday.)

Also, our first research article is available at no cost, as the publisher of Psychiatry Research offered the first issue free on the Internet. You can view it here:

First, regarding the Conference. Before you commit to attending, make sure you review the conference program, and make sure it is worth your money. We will be having an informal gathering with Dr. Simeon on Monday, and the main focuses on depersonalization will be our papers. In my opinion, one of the more important presentations will be on Sunday, which will co-hosted by Dr. Simeon, and discuss the future of dissociative disorders in the DSM-V, and also how the research article above is part of the evidence to suggest that we need a stronger and more accurate diagnosis for DPD. Also note, the Paper Seminar for our second paper, not yet in press, is part of many seminars given during the length of the conference, however it is an important one, and looking at the schedule it doesn't have much competition in my biased opinion. If you are attending just to hear a 20 minute presentation of the paper, and the cost to attend the day and a hotel is stretching your budget... don't worry, individuals will report on it when they come back. We will also have a recording of the seminar in mp3 format. However, to use this opportunity to meet other individuals with DPD from this board and Dr. Simeon, and go out after the conference with people who have the same condition and feelings as you is a tremendous opportunity. If you don't want to pay for the seminar, but live in Chicago, I think individuals can organize a post-conference get-together, and I lived in Central Downtown at both the Chicago Loop and Gold Coast areas for 2 years, and I know the place well.

Okay, now for the information that I have contained the the pdf file above.

The National Organization for Drug-Induced Disorders

Recent Accomplishments to Improve the Diagnostic Criteria and Understanding of Depersonalization Disorder

Dear Community,

NODID?s research is an integral part of the body of evidence that demonstrates the severity of depersonalization disorder and argues for an improved diagnosis for DPD. Our two publications present strong evidence for improving the diagnostic criteria of DPD, and with such a large participant turnout (394 people took our survey), that DPD will continue to be included in the next edition of the DSM (Diagnostic and Statistical Manual of Mental Disorders). The following is a quote from the recent ISSTD (International Society for the Study of Trauma and Dissociation) Newsletter regarding the importance of maintaining this type of research:

?As we all know, there are powerful forces that attempt to deny the existence of the dissociative disorders, attacking both the patients and their therapists; up until now, the fact that the DSM ?officially? recognizes the existence of the dissociative disorders has been one of the main bulwarks in our fight to advocate for these patients. If the DSM-V committee were to downgrade the status of the dissociative disorders, or to define them out of existence, the consequences for our field would be catastrophic...

?Our goal is not only to offer advice to the APA as it revises the DSM, but also to present the APA with powerful new research that will upgrade the accuracy of the DSM?s diagnostic criteria and, most importantly, forcefully argue against any attempts to diminish or marginalize the importance of the dissociative disorders.

All those who are interested in learning more, or in offering their input, are invited to attend the panel discussion in Chicago entitled ?DSM-V in only IV more years: An update on ISSTD?s research efforts?. The co-chairs of the Research Planning Committee are Daphne Simeon and Vedat Sar.?

-- Brad Foote, MD, ISSTD SEIZING DSM-V OPPORTUNITY, ISSTD Newsletter, Vol 26, Issue 5)
Before you become anxious about this catastrophic scenario described by the author of that article ? one where the American Psychological Association downgrades or negatively alters the existence of depersonalization disorder in the DSM version V ? this is not a likely scenario. Dr. Simeon?s group, the members of the Institute of Psychiatry of London, and other researchers have produced significant evidence against such a possibility. To quote our first paper, ?two large cohorts have described impressively consistent nosology for depersonalization disorder (Baker et al., 2003; Simeon et al., 2003a). However, this progress has not yet been reflected in more refined symptom descriptions, which would facilitate a more sensitive and accurate detection of the disorder.? However, NODID?s first paper does analyze a set of factors that the DSM-V Task Force will consider when making more refined symptom descriptions for depersonalization disorder.

Regarding the Conference in Chicago

Dr. Daphne Simeon is the co-chair of the ISSTD?s DSM-V Research and Planning Committee, the group working to provide evidence for maintaining the inclusion of dissociative disorders in the DSM-V and to better define the diagnostic criteria for depersonalization disorder. Two members of the ISSTD are members of the DSM-V task force for dissociative disorders; they will be listening to the recommendations of this committee.

Dr. Simeon will be presenting our research as one part of the emerging evidence supporting the need for improved diagnostic criteria of depersonalization disorder. Our first paper will be part of an important panel discussion that will include Dr. Simeon and the President of the ISSTD. The panel discussion is scheduled on Sunday at 1:45, and is guaranteed to have a large audience at the conference. All of the study?s participants, the web site, and our supporters should really feel empowered by this ? your participation in this research has a very tangible role in forming the DPD diagnosis, and individuals attending this conference will get to see this first hand. The amazing turnout for our study is a significant factor in the validity of our research; there were 394 participants in our study, which is a testament to the importance of DPD, and improves the statistical basis for our conclusions in the study. The quantity of participants made this the largest study of its kind on DPD, and our paper contains a significant amount of new information that we systematically analyzed for the disorder.

Additionally, Dr. Simeon will be presenting our second paper during a paper seminar at 8:30 AM on Monday. We are one of four papers that will be discussed during a 1 ? hour long Paper Seminar. The paper conference will provide a look at how depersonalization disorder affects individuals on many levels, and will address if drug-induced DPD results were different than non-drug (spoiler: no statistical difference between the groups except one element, duration of disorder, but we discuss reasons why this difference exists in the populations that took this survey). This new paper has recently obtained an important endorsement from a very rigorous international peer-review board, and we are overjoyed to announce that our second paper was recently accepted for publication in the Journal of Clinical Psychiatry, the most-read journal in the field (; see below), and clinicians around the world will see the results of our study.

?The Journal of Clinical Psychiatry continues to be ranked as the most-read and 6th most-cited psychiatric journal in the world (according to the Focus Readership Study, June 2007, and Citation Index, July 2007, respectively). The Journal mails to about 35,184 recipients,* and over 20,000 allied mental health professionals have requested daily receipt of informational e-mails about our journals and Web CME activities.
*Source: BPA Circulation Statement, June 2007?

(, bold emphasis added by me)


* FIRST PAPER (SUNDAY): Daphne Simeon, David Stephen Kozin, Karina Segal, Brenna Lerch, Roxanne Dujour and Timo Giesbrech, De-constructing depersonalization: Further evidence for symptom clusters, Psychiatry Research, Volume 157, Issues 1-3, 15 January 2008, Pages 303-306

* SECOND PAPER (MONDAY) Daphne Simeon, David Kozin, Karina Segal, Brenna Lerch , Is depersonalization disorder initiated by drug use any different? A survey of 394 adults, Journal of Clinical Psychiatry, (Accepted: October 12, 2008; in press)

NODID?s research has a tremendous opportunity to influence the mental health community?s view of depersonalization disorder, and we want to thank all of you for your generous support during its creation and for our future. We are excited that members from this message board will be attending the conference, and will see how the research directly affects the way clinicians from around the world will view DPD. This conference will have members from over 40 different countries, and more importantly, the publication?s presence in the Journal of Clinical Psychiatry will insure its impact on how doctors will view DPD in the future.


See less See more
1 - 4 of 10 Posts

Panel 1 ? DSM-V in only IV more years:
An update on ISSTD?s research efforts
Brad Foote, MD, Chair; Vedat Sar, MD,
Discussant; David Spiegel, MD; Paul Dell,
PhD; Daphne Simeon, MD

The American Psychiatric Association
plans to publish DSM-V in 2012, an
occasion of great import for the mental
health field in general, and for the dissociative
disorders in particular. Since
2004, ISSTD?s DSM-V Task Force has
been formulating a research agenda that
can influence the DSM-V classification
of the dissociative disorders. Areas of
particular interest include: 1) developing
research-based criteria to better account
for the many complex dissociative
presentations which do not meet DSMIV?s
criteria for DID, and to reduce the
current unacceptably high proportion
of ?DDNOS? diagnoses; 2) developing
user-friendly diagnostic criteria which
correspond better to the DSM?s generally
polythetic format; 3) developing and
testing new diagnostic criteria for depersonalization
and 4) reclassifying
conversion disorder as a somatoform
dissociative disorder. The panel will
review the historical, theoretical, and
empirical literature in each of the above
areas. Finally, the panel will summarize
and discuss the status of ISSTD?s current
research efforts as we count down to the

Paper Session 12 ? Research
? Is depersonalization disorder initiated by
drug use any different? A survey of 394
adults, Daphne Simeon, MD; David Kozin,
BA; Karina Segal, BSc, Brenna Lerch, BA

? An update on suicidality and dissociation,
Brad Foote, MD; Karie Nygen, MD;
Noam Fast, MD; Jane Park, BA
? The dissociative brain: Feature or ruled
by fantasy?, Simone Reinders, PhD; Mark
van Ekeren, MSc; Herry Vos, MD; Japp
Haaksma, PhD, Antoon Willemsen, PhD;
Johan den Boer, MD; Ellert Nijenhuis, PhD
? Evaluating dissociation and post-trauma
by means of the Rorschach test, Gadi
Maoz, PhD
See less See more
Other Interesting Events on Monday, for those who were going. (Many are concurrent, I haven't decided on my own)

Paper Session 13 ? Family environment
in trauma and dissociation

? Family environment, depression, and alexithymia in adult survivors of childhood sexual abuse, Yenys Castillo, MS; Jesse Morrow, BA; Steve Gold, PhD
? Parental stress as a mediator between emotion regulation and posttraumatic stress symptomatology in traumaexposed children, Angela Vascotto; Julie Margulis, MA; Robert Muller, PhD
? Memory disturbances due to childhood abuse: Examining betrayal trauma theory, Victoria Lishak, BA; Susan O?Rinn, BA; Catherine Classen, PhD; Robert Muller,PhD
? Dissociation and domestic violence clients, Kevin Connors, MS, MFT

Paper Session 14 ? Existential Issues in
trauma and dissociation

? The reality of death for therapists working with dissociative clients, Lyn Williams-Keeler, MA; Christine Courtois, PhD
? ?Where were you God??: How trauma survivors gain (or regain) their spiritual/ religious faith, Sharon Phelps, PhD
? ?Orts, scraps and fragments?: An anatomy of Virginia Woolf?s suicide, Theresa Albini, LCSW
? The dissociated state known as ecstasy, Sharon Farber, PhD

Symposium 11 ? Placing dissociation in
the mainstream of current psychological
thinking, Kenneth Beattie, PhD, EdD, Chair

? Dissociation viewed from an evolutionary- developmental perspective, Kenneth Beattie, PhD, EdD
? Normative dissociative processes, Lisa Butler, PhD
? Phenomenological and discourse analyses of dissociation, Kymbra Clayton, PhD candidate
? The cognitive approach to studying dissociation, Martin Dorahy, PhD

Symposium 12 ? Therapeutically founded and self-organized networks as additional parts of multi-modal trauma psychotherapy, Ralf Vogt, PhD, Chair and Discussant
? Introducing an analytical action-oriented model of complex traumatized adults, Ralf Vogt, PhD, Irina Vogt, DP
? The foundation of a social network ? a case study from an adult course of therapy, Irina Vogt, DP; Ralf Vogt, PhD
? Case study of the interdisciplinary medical and psychotherapy treatment of a five-year-old girl, Franziska Schlensog-Schuster, MD; Ralf Vogt PhD
? Changes in the traditional physicianpatient relationship in treating complex traumatized patients, Sebastian Schuster, MD; Franziska Schlensog- Schuster, MD

Mini Workshop 18
Building connections: Working toward
co-consciousness in adult and children
clients, Sandra Baita, MA; Anabel Gonzales
Vasquez, MD

Paper Session 15 ? Retrospective lessons
? Dissociative Disordered patients? perspectives of the helpful and harmful aspects of their treatment, Lorien Baker, BS; Gabrielle Gill, BA
? Spontaneous integration: Possible reality or wishful thinking?, Heather Gingrich, PhD
? Lessons from the natural course of Posttraumatic Disorders, Andreas Laddis, MD
? Twenty-five years of presenting at ISSTD, Colin Ross, MD

Paper Session 16 ? Etiology and evolution in dissociation
? Trauma is not enough, Oliver French,MD
? Shame as etiology for dissociation, BenjaminKeyes, PhD, EdD
? Antelope and baboons: An evolutionary view of the compliance problem in work with dissociative clients, Kenneth Beattie,PhD, EdD

Forum ? Getting out the word: Twentyfiveyears and beyond in local education
on dissociation,

Su Baker, MEd; Janet Migdow, MA; Dennis Pilon, LMSW, ACSW, BCD; Jocelyn Laverinto, MA

Mini Workshop 19 ? Borderline psychosis, double binds and chronic relational trauma in Borderline Personality Disorder,
Ruth Blizard, PhD

Mini Workshop 20 ? Contextual approach to integrating compartmentalizedself-states: The political is personal, Steve Gold, PhD

Mini Workshop 21 ? The clinical assessment and treatment of trauma-related self and affect, Annemieke van Dijke, MSc

Mini Workshop 22 ? Forgiveness: the use and misuse in the treatment of trauma and dissociation, George Rhoades, PhD

Mini Workshop 23 ? Researching trauma, dissociation, and attachment in non-clinical populations, Kelly Forrest, PhD, JD; Paula Thompson, PsyD

Mini Workshop 24 ? Who?s in charge here? Patterns of dysfunctional control in severely traumatized clients, Kevin Connors, MA, MFT

Mini Workshop 25 ? Reaching for relationship: Exploring the use of an attachment paradigm in work with dissociation,Sue Richardson, RAPP
See less See more
I have been watching a lot of American politics on the Internet and T.V., so I think of this in terms of an election -- for better or worse.

I have really seen the base of this group energized to pull together to create awareness of the disorder, to educate themselves on the disorder, to fly across the country to join a few fellow sufferers to learn about the effect that current research is having on DPD and dissociative disorders as a whole. Different individuals are working on their unique projects, and Erin and Robyn raised a tremendous amount for their DP Cause.

The International Society for the Study Trauma and Dissociation is really the big group that is fighting to keep dissociative disorders an important and unique group of disorders in the American Psychological Association's Diagnostic and Statistical Manual. The DSM gets a major revision every 7-15 years or so.

"The American Psychiatric Association published the DSM-III in 1980, DSM-III-R in 1987, and DSM-IV in 1994. Currently, the DSM-V is scheduled to appear in 2012. This is an extremely important event for all of us who work with dissociative disorders." Brad Foote, M.D., ISSTD
This will be a big revision, and 4 years is not a lot of time in the time scale of research. You have seen how long it took from us to start asking for your participation in our survey until getting one publication in print in January 2008, and based on the usual turn-around-time for the Journal of Clinical Psychiatry, another 6 months until our "major results" are published. It took about 4 years to get this out, which admittedly is a little longer than typical because our project was unfunded, and did have to be placed on the back burner at Mount Sinai School of Medicine during critical months for their own students and lab to get their work out in order to graduate. However, THIS group's participation was very large, 394 individuals, that it is the largest systematically studied group of individuals with depersonalization disorder ever conducted, and it is being placed in the most read psychiatric journal in the world. That 1 hour each individual took out of their day to complete the survey has finally paid off in helping affect the critical decisions that will be made in the DSM-V. Notably, two members from the DSM-V Dissociation task force will be at the conference to hear the first paper and hopefully the second paper's results (it will be my job to use Dr. Simeon's pull as co-chair of the ISSTD's DSM-V revision group to see if I can get those individuals to hear both of our papers; if not, at least they will read the second one when it is published. )

Individuals are coming up with unique projects with Erin and Robyn, and more members on Facebook are really saying enough is enough of not being taken seriously by the some members of the clinical community. There are psychological schools of thought that do not support dissociative disorders as a unique group, and they are trying to argue their positions. Luckily, Dr. Simeon's group and the Institute of London's DP group are really pushing out great work to affect this outcome. The ISSTD is calling out for more research, and we are listening to their call. I will be bringing up-to-date information on field trials from different doctors related to this disorder after the conference.

I have had the pleasure to speak to many individuals from this board on the phone recently, and the most common question I get is, "Do you have DP?" My answer is no, I don't, but I wanted to share with you how I became interested in researching this disorder.

I have Hallucinogen Persisting Perception Disorder, which is essentially having 24/7 vision perception problems (like LSD) that include objects always swaying in my vision, afterimages all over the vision, blurred vision that can not be corrected with lenses, colors changing, seeing faces in the overwhelming visual snow in my vision, and the list goes on and it will be with me for the rest of my life, unless a cure is gound. After damaging myself with drugs, I didn't want to take a stance that I wasn't warned that drugs can be harmful, and I knew better intellectually, but wasn't making the best choices. So, I choose to create a web site, message board, and informational web site to help inform other individuals on the Internet about the disorder and to give a place for people who have had it for many years to be able to recognize and say, "Hey, I am not crazy, other people have this too." We estimate that it takes around 6 doctors until an individual with HPPD will get the right diagnosis, and in many cases it has been a lifetime for people and my message board until they were able to get it. I think the story is the same for many of you. (Actually, I asked that question in our research, so I know how many doctors it took for many of you, and a little less than 1/3rd said 6 or more).

So, as the message board grew I noticed many individuals were talking about their depersonalization and derealization, which I could sort of conceptualize from my past drug use, but knew that I didn't know what it was like to have the disorder, and every day. So, I asked the doctor who essentially was the reason HPPD became a diagnostic entity about DP and DR, and the answer I received was, "well, it is a clinically vague term."


That was wholly unsatisfying, because I am reading on my message board people describing it in not-so-vague terms, and they were suffering in a very not-so-vague way. Nothing upsets me more that when the clinical community denies a disorder as real, but doctors refuse to change their dogmatic stance, and some just follow the old line that they were taught years ago. In combination with this ridiculous answer and hearing the suffering of very sensible, now drug-free individuals talking quite clearly about their symptoms, I went to the primary literature on MEDLINE. It didn't take me long to both realize that the evidence was beginning to mount to argue against the idea of "clinically vague" and to notice one name popping up over and over again, Dr. Daphne Simeon at Mount Sinai School of Medicine. I knew she was the doctor who could answer some questions.

During this same time, I co-founded an organization that had an original mission to help individuals who suffer from drug-induced disorders, specifically HPPD and drug-induced DPD. Already having the support of the Associate Director of Substance Abuse from Harvard's McClean hospital on my Advisory Board, I reached out to Dr. Simeon. She was very eager to help, and trusted us to say yes as an Advisory member of our organization (which was just barely getting its public charity status going at that time).

When I returned to school, I was on the phone with Dr. Simeon and I had a lot of questions about DPD. I wanted to know suicide rates, how long it lasted, what were all of the treatments that were tried and how effective they were, what other triggers besides drugs caused depersonalization, what are the neurobiological explanations for DPD, what drugs can trigger it, and my list went on. She didn't have all of these answers, and said to me, "Well, why not start researching these questions? I could give it to the review board here, and supervise the project, and we will see if we can get some answers." Of course, as an undergraduate student, sitting in a room at the library and just being told by the leading researcher in this field that she was going to work with me on a research project made me ecstatic. I never thought that this was going to go to publication in journals, but the opportunity to get answers and learn from Dr. Simeon was an amazing opportunity for the organization and for me. I looked on this board and asked Brenna if she wanted to take part, and for those of you who know Brenna, she isn't one to turn down a chance to do something positive for DPD.

We started discussing questions together, and she was able to bring her personal experiences to help add new questions to my own, and I asked individuals on this board what questions they would like answered, and included some of those as well. We decided on a time restraint for the study, because we didn't want people to stop half-way and lose participants. We were hoping for 100, and that would be a good sample size. Dr. Simeon took our research survey to Mount Sinai School of Medicine's Grant's and Contracts Office, which approved the study, and I used my ok programming skills to convert the study into an online version.

394 participants took part.

And that is how my story with DP began, and how NODID became involved with DPD research. Although we looked to see if there was a difference between drug and non-drug induced DPD, our publications addressed the entire group, and we collected information separately for each group, but found no difference on 95% of the answers between the groups (which were naturally divided in about equal numbers, although significantly more males in the drug group than females). To me, it didn't matter how the person got the disorder, but that the disorder was running into the same problem that HPPD was, and even though I didn't understand what it was like to suffer from DPD, I did know what it was like to not be believed by doctors, and to have the DSM poorly reflect the reality of the problem. The DSM has a worse diagnostic criteria for DPD than it does for HPPD, and we estimate 1-2% of the population is affected by it in various degrees (HPPD is considerably less). To put it bluntly, WTF? Has nobody been listening to these people (you), and just like I had doctors who called HPPD an "imaginary", "psychosomatic", or "unlikely" disorder, despite having EEG and other quantitative data to back it up, so to was DPD sufferers getting these same answers, despite the neuroimaging and psychometric studies to back it up.

Well, it now seems like the tipping point.

This is a long message, which from my experience as a message board OP means it wont' be read, but I can point to it in the future when somebody asks me what my intentions are, and how did I get involved in this.

Very truly yours,

See less See more
1 - 4 of 10 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.