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,