# Cure DP Campaign



## PhoenixDown (Mar 3, 2011)

Hey,

I want to start a cure DP campaign. I don't care how small it is, it may lead to something important in the long run.. or at least provide the function of raising a little more awareness. I know University Girl has pushed for this type of action in some of her youtube videos. There could be so much more in terms of awareness, support and resources.

I was thinking that a pamphlet would be great, perhaps a website to push the cause. If we could get a gigantic group of DP sufferers to raise there voices this may have an impact. Could DP actually be a major invisible problem in our society. Is it that rare? I'm assuming there a literally hundreds of thousands of DPers out there, many who are unaware of what they are suffering. We need people to start acting out. I realize that this is very difficult for some of us who feel stigmatized with this condition. Jesus, I mean I felt judged telling my own girlfriend what I was feeling. However, we as sufferers of DP are not vocal enough about our experience and we let psychiatrists tell us what is happening. We are the ones having the experience - this condition must be made public. To me, the ignorance on this issue is the equivalent of medicine not acknowledging a major disease. There should be teams of people working _around the clock_ to find a cure. There has to be a huge number of people suffering from DP, more than enough to make a huge push. The reason all of this apathy is on the forum is that even the professional community isn't offering answers. There condition itself is hidden. There is no feeling of hope. We need great minds pooling together to understand this condition.

Is it really necessary to just wait this out? How long can you continue with the acceptance stragetegy? Should we really settle for this life? Should we allow future generations to have to experience this same horror? We have to fight this.

Ideas? Thoughts? Opinions?


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## Jayden (Feb 9, 2011)

It's time to make shit happen, I'm all for it


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## York (Feb 26, 2008)

I totally agree with you when it comes to raising awareness about dp, and how that might impact the help offered to sufferers.

I am however scared to think what that help might mean. In my experience going in and out of this state for years, the only thing that truly help is help on a human level. Understanding, love, patients from people around you, rest, getting help gaining confidence you can beat it and so forth.
All "cures" that are largely overlooked by the medical profession, who are the ones who'd jump at the opportunity to deal with this if it came into public light.

It's proven over and over that you can cure mental illness with talk therapy, stress relief, diet, exercise, and just being cared for, but that cost time, and time is money. It would bring psychiatry to it's knees, and I'm pretty sure they still won't have that happen.

I wish it was possible to raise an awareness so you could get a diagnosis and proper help right away. I'm just scared it would mean you'd be expected to take drugs, and put more money in the pockets of psychiatrists, instead of getting people support, care and time like they need. Maybe if we could find a celebrity

But I see what you mean. We shouldn't have to fight to be understood and get help. It's weird how accepted anxiety is, but dissociation is hushed down and shoved under the carpet like a great shame.


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## anarkii (Jul 2, 2011)

I created a subreddit for DP/DR. So if there are any redditors around here feel free to add content


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## violetgirl (Apr 11, 2011)

There is no money to be made from DP, as it's not something you can medicate to cure, which is why there is hardly any research into it. Plus, it's often mislabeled or the patient finds it hard to describe.

*DP is not a condition on it's own*. DP is an (involuntary) coping mechanism, that's supported by disordered thinking, trauma, abuse, low self-esteem, attachment issues etc. If you build a strong, healthy foundation within yourself, face up to trauma etc the DP will go.

There are plenty of recovery stories on this site, with many different ways to heal, some for short term DP some for long, after all, we all get DP for different reasons. 
I think taking vitamins- omega 3 etc is a good idea, as it strenghens the brain, but psych medication are uselss, as you can't medicate emotions. Even anti- anxeity meds are a bad idea, as yet again you are medicating an emotion, and that is something you can control yourself. There are many natural ways you can help anxeity, breathing techniques. It's best not to pollute your brain with medication, when it is already in overload.

As well as processing my childhood trauma, attachment issues, etc which helped shift the DP. I found Mindfuless meditation really helpful, connecting me to my body again and helping me with the anxeity that I got from the flashbacks. Other people found releasing built up anger helped them. There's something called 'Trauma Releasing Excercises'.

Seriously, everyone on here could recover, I recovered with no psychiatric intervention, just did it all DIY, as a lot of people seem to do. I believe that talk therapy can help, to express and work out your issues.

From reading people's stories on here, those who get it in childhood is usually from abuse, and can be harder to shift. But I got it at 8 years old, and I recovered. And for others it seems to be years of pent up emotions, trauma that's not been dealt with, years of anxeity finally pushing them over the edge.

Seriously, stop looking for a single cure, because there never will be one. Everyone has different personality types, reasons for getting DP, different types of abuse. *DP and anxeity ar not the same thing,* but DP *can* be triggered by anxeity, as well as trauma, shame, abuse etc. It's possible to get DP without having anxeity.

I think that the tendency to dissociate comes from a poor attachment as a child, bad family systems etc. Something that's ingrained deep within us, that 'pops up' for one reason or another. Maybe because of anxeity overload from repressed anger/ pain, stress, change in life, relaitonship break ups.

So honestly, don't look for this single, catch all cure. Look inside yourself, why do you think you got it? DP is a pretty rare dissociative disorder that doesn't just happen for no reason.

*PhoenixDown*, you seem from your posts on here, that you are very depressed and exasperated. Take a step back, and try to look at the bigger picture. Don't get obessive about finding a cure, find out why you think you got DP- attachment issues, abuse, trauma, family systems etc. Take back control and look into yourself and your life to figure out why you got it, and then the DP will go. Start writing a diary, write stuff down about how you feel.
Trying to 'cure' DP is impossible, if you don't 'cure' yourself first. 
Good luck


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## PhoenixDown (Mar 3, 2011)

in response to your post violetgirl:

*There is no money to be made from DP, as it's not something you can medicate to cure*

????. Not yet.. that's why I made this post. There is tons of research into neurological basis for DP.

*DP is not a condition on it's own.*

Yes it is, it's called Depersonalization Disorder

*Even anti- anxeity meds are a bad idea, as yet again you are medicating an emotion, and that is something you can control yourself.*

Wrong, anxiety can be extreme and out of your control. That is why people suffer chronic anxiety problems even after treatment. Futhermore, there are numerous posts about people benefitting or even being cured by anti-anxiety meds on this forum.

*Seriously, everyone on here could recover, I recovered with no psychiatric intervention, just did it all DIY, as a lot of people seem to do.*

Not everyone could recover. You are committing a logical fallacy in assuming that because you have recovered so will others. Plus, didn't it take you 20 years to recover? Aren't u the Harris Harrington recoveree? Or are you just Harris Harrington posting under another alias?

*Seriously, stop looking for a single cure, because there never will be one. Everyone has different personality types, reasons for getting DP, different types of abuse. DP and anxeity ar not the same thing, but DP can be triggered by anxeity, as well as trauma, shame, abuse etc.*

The most advanced research in this field points to the fact that regardless of the cause, DP is the same condition.

*So honestly, don't look for this single, catch all cure. Look inside yourself, why do you think you got it? DP is a pretty rare dissociative disorder that doesn't just happen for no reason.*

We've all looked inside ourselves more than we should have ever needed to.

*PhoenixDown, you seem from your posts on here, that you are very depressed and exasperated. Take a step back, and try to look at the bigger picture. Don't get obessive about finding a cure, find out why you think you got DP- attachment issues, abuse, trauma, family systems etc. Take back control and look into yourself and your life to figure out why you got it, and then the DP will go. Start writing a diary, write stuff down about how you feel.
Trying to 'cure' DP is impossible, if you don't 'cure' yourself first. 
*

I'm not even sure why you felt the need to try and compromise my message by pointing at my depression and exasperation. You act as if my initial post was irrational. This whole 'figure it out and you will feel better', or 'just accept it and you will feel better' is nonsense . Of course acceptance helps, that applies for all chronic conditions. For those suffering from anxiety DP, maybe it will be the cure - but it is not an answer for many of us. Furthermore violet, I am looking at the bigger picture, and the bigger picture says I may have DP for the rest of my life - or at least through my prime. This is why I'm looking for answers now. In looking for answers I'm not obsessing, I'm trying to take rational action in order to help future generations that will have to face this same issue. You say "take back control", what does that mean? Those are empty words. When I look around this forum at people who have been suffering for 2-20 years, I think to myself there has to be some solution. Or at least some path to seriously better our quality of life. I'm not pointing to a magic cure - I'm hoping to raise awareness, encourage professionals to research more, and find methods of helping us all reach a more happy and fulfilling existence.


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## birdiehead (Apr 19, 2010)

PhoenixDown said:


> in response to your post violetgirl:
> 
> *There is no money to be made from DP, as it's not something you can medicate to cure*
> 
> ...


i agree with everything you said phoenix! it's not so damn simple. this disorder is killing me!! i'm not trying to pick sides i just agree with what you said.


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## cris24333 (Oct 30, 2010)

maybe make a page on facebook


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## violetgirl (Apr 11, 2011)

PhoenixDown said:


> in response to your post violetgirl:
> 
> *There is no money to be made from DP, as it's not something you can medicate to cure*
> 
> ...


Wow! No need to be so defensive, I was only trying to help you. You take things the wrong way. How did i make out your initial post was irrational? I was trying to be compassionate and acknowledging that you seem depressed in many of your other posts I've seen as I felt sorry fro you, not sure why I bothered taking the time to write out this answer. I didn't say 'accept it', did i? I am very much against that. What I meant was, stop focusing on the DP, because the DP is masking something, try to find out what that is- look at the bigger picture.

For one thing, yes I had DP for 20 years since I was 8 years old, but I got better within months when I 'got it'. I only heard about DP in January, and since then I've been recovering. It dind't take me 20 years to recover, but thanks for twisting what I was saying, to suit yourself and make a point about how I musnt' know what I'm talking about. I know that everyone gets DP for different reasons, different ages etc. And not every method will work for others, but there are cures, if people are being cured! So maybe we could collate those, and put them on a website?

But DP is not a medical condtion, is it? Its not a mental illness, it's a coping mechanism in the brain, so how can you medicate it?

DP is not a condition on it's own, it's supported by many things that have gone 'wrong' in your brain/ life/ emotion. How can you medicate an emotional response? So, someone dissociates during childhood due to abuse, and there's gonna be a tablet to stop that?

Anxeity is always in your control, as long as you let it. Polluting your brain with these psych meds is not going to cure you, as when you come back off them, the DP will come back. Anxeity is rooted in emotional problems, it's not an 'illness'. It's your brain stuck in 'flight or fight' response, and you can train it out of it.

Yes, I know that DP is the same condition regardless of the cause. Just as alcoholism, self-harm, anorexia and other coping mechanisms are the same condition. But curing them takes different methods as people get them for different reasons. Treat the reason, not the condition, otherwise that's pointless. For example, a woman who got DP from years of sexual abuse/ rape will require different therapy from someone who got DP from emotional abuse. Someone who gets it from stress, relationship break ups etc will need a different approach.

I mean look inside yourself, as in your personality/ family etc. Not OCD ruminations etc.

Try something called Mindfulness, it really helped me in my recovery. That is something that can HELP, but not cure. It could teach you to live in the moment, and ease the anxeity and worry that comes with DP. Plus, it's free! It's used to help treat PTSD as a grounding technique, so should help with DP as well. 
http://www.dpselfhel...ou-please-read/


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## violetgirl (Apr 11, 2011)

birdiehead said:


> i agree with everything you said phoenix! it's not so damn simple. this disorder is killing me!! i'm not trying to pick sides i just agree with what you said.


I never said it was 'that simple'. I am well aware of how complex DP is and the many reasons for getting it.
Recovering was extremely painful and emotional, took a lot of hard work. It was a complete headfuck and I suffered flashbacks and regression, but I stuck with it. And I work hard to maintain my recovery. I am well aware of how hard it is to shift it.

All I'm saying is, DP is an emotional response, as is anxeity. So treating them as illnesess won't help.


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## violetgirl (Apr 11, 2011)

Ok, so putting our differences aside, we should try to be proactive.

Is there some kind of DP/ DR organisation? If not, we should start one, I'd be happy to help. Make it official and register it. And create leaflets/ booklets to give to psychiatrists/ doctors with checklists and signs to look out for. Also, raise awareness of misdiagnosis as well.

Also, I think having a website solely dedicated to recovery stories, methods that helped, ideas about DP. Recovery stories or ideas about DP treatment tend to either turn into a discussion/ arguement, or get lost in countless threads about symptoms. Just somewhere people could go to see things that have worked for other people without the 'full on-ness' of a DP forum.

When I recovered, I wrote a long explanation about how I recovered from my DP to my old psychologist so he could pass on to people to see if anything I did could help other people. 
I even wrote to newspapers about DP, but as it's not 'glamorous' or has a happy ending, nobody seemed to be interested. If I had money, I'd love to make a public broadcast about it lol. Just imagine all those people sitting at home not knowing what the hell is going on we could reach! If I didn't know about DP for 20 years, there must be more like me out there, people who got it before the internet who are still struggling with it


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## Guest (Sep 13, 2011)

I'm with *Phoenix* on a good bit of this...



cris24333 said:


> maybe make a page on facebook


There are two. There is a "Cause page" and another page. Sorry don't have the links. Look in the Links section here for the "FB DP Cause"

Re: DP being an emotion

*@Violetgirl:*
Emotions are again a whole other bag of wax in terms of psychology/biology and this is certainly not an area of expertise for me by a long shot. But I do not consider DP an "emotion" and it is my understanding that brain disorders are not emotions, though you could say they are extreme debilitating versions of instincts, or simply neurological disorders. For example one wouldn't call OCD an "emotion." PTSD is not "an emotion." CLINICAL depression is not an emotion ... however these would be a PATHOLOGICAL versions of normal emotions. Alzheimer's (also in the DSM-5" is not an emotion.

I realize many people don't read some of my posts as they are tl:dr, lol. But I have a stupid chart I got from Wikipedia, and some description that is simple and a longer description.

*In my book DP is a perceptual distortion. And as noted, not everyone who has DP has been abused. Some are less anxious than others. And neurologists see it all the time in stroke, epilepsy, migraine, head trauma. It is "an altered state of consciousness" like deja-vu. And I will say for myself... this chronic sense that my arms are not attached to my body -- that has been with me for years -- that is the definition of DP vs. DR. My body feels strange. That is not an emotion, it is a perceptual distortion as phantom limbs are. There is no thinking that has ever changed that, and it just "is" whether I am sad, happy-er, angry, etc.*

OK, stupid chart, lol.









Note in the chart that there is a spectrum. Bur for example, the "baby blues" are not "post-partum depressioin" ... PTSD is not normal stress, fear, etc.

From Wikipedia:

http://en.wikipedia.org/wiki/Emotions

*The English word emotion is derived from the French word émouvoir. This is based on the Latin emovere, where e- (variant of ex-) means "out" and movere means "move."[3] The related term "motivation" is also derived from the word movere."

[The word OUT is important here, emotions are EXPRESSED, others clearly see them, individuals with and without mental disorders feel them.]*

"No definitive taxonomy of emotions exists, though numerous taxonomies have been proposed. Some categorizations include:[citation needed]

= "Cognitive" versus "non-cognitive" emotions
- Instinctual emotions (from the amygdala), versus cognitive emotions (from the prefrontal cortex).
- Categorization based on duration: Some emotions occur over a period of seconds (for example, *surprise*), whereas others can last years (for example, *love*).

A related distinction is between the emotion and the results of the emotion, principally behaviors and emotional expressions. People often behave in certain ways as a direct result of their emotional state, such as crying, fighting or fleeing. If one can have the emotion without a corresponding behavior, then we may consider the behavior not to be essential to the emotion.[citation needed]

The James-Lange theory posits that emotional experience is largely due to the experience of bodily changes. The "functionalist" approach to emotions (for example, Nico Frijda and Freitas-Magalhaes) holds that emotions have evolved for a particular function, such as to keep the subject safe.[citation needed]" [The James-Lange theory is in dispute and more or less in disrepute]

--------------------------
I may get frightened over my DP/DR when it gets HORRIBLE (far less so the past 20 years), or angry, or sad, but it is a perceptual experience that CAUSES me to have or express emotions, such as Phoenix who may be ... in lay terms .... the extreme of sad, the extreme of angry/frustration, etc.


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## Guest (Sep 13, 2011)

http://www.dpselfhelp.com/forum/index.php?/topic/28894-taking-action/

This should be attached to this thread. This is being discussed in two places. I wrote a tl:dr in that.
Also there are studies IN NEUROLOGY on DP/DR, and studies worldwide. Not just the IoP, Mt. Sinai, etc. There are other individuals interested in the topic. The problem is this takes a back seat to "the big mental illnesses" -- schizophrenia, bipolar, clinical depression, schizoaffective disorder. These "top" illnesses result in individuals being on welfare/disability which costs SOCIETY money. They can't work which is a loss of contribution to society both in ideas/talents and taxes. Such individuals take up hospital beds, are in jail, are homeless.

Also, 98% of suicides are committed by individuals with mental illness. That is also a statistical nightmare. Also, many of the recent mass shootings in the US have been committed by mentally ill individuals. The shooting of Gabby Giffords, and the IHOP shootings and suicide by the perpetrator were committed by individuals with schizoprhenia who "slipped through the cracks" in our horrible mental health system.

I will also say again. Self-diagnosed individuals on here are NOT adding to the statistics. But Dr. Sierra in his medical textbook indicates that 1-2% of the population has DP Disorder.


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## violetgirl (Apr 11, 2011)

Dreamer* said:


> *@Violetgirl:*
> Emotions are again a whole other bag of wax in terms of psychology/biology and this is certainly not an area of expertise for me by a long shot. But I do not consider DP an "emotion" and it is my understanding that brain disorders are not emotions, though you could say they are extreme debilitating versions of instincts, or simply neurological disorders. For example one wouldn't call OCD an "emotion." PTSD is not "an emotion." CLINICAL depression is not an emotion ... however these would be a PATHOLOGICAL versions of normal emotions. Alzheimer's (also in the DSM-5" is not an emotion.
> 
> I realize many people don't read some of my posts as they are tl:dr, lol. But I have a stupid chart I got from Wikipedia, and some description that is simple and a longer description.


Dreamer, I always read your posts I find them intereting!

Ok, I may not have explained myself very well, so I'll try again lol

I do not believe that DP is an emotion. I don't believe OCD is an emotion. But it's an *emotional response* that then goes onto cause a neurological imbalance in the brain. It mucks with the memory, vision, emotional processing/ reasoning and so on.

As I understand it, emotional problems, especially from childhood can cause certain parts of the brain to malfunction. And the brain gets stuck in a 'fight or flight' response, and that turns into anxeity. Trust me, I know how out of control anxeity can get. But it's not an illness, it's an emotional respose. To me, an illness is bipolar, schizophrenia etc.

IMO, DP is a coping mechanism that has gone wrong. Much like self-harm, eating disorders etc, it's something that is triggered by underlying emotional problems. And I don't believe that you can medicate emotions or trauma.

Honestly, it's not my intention to be hurtul or force my views on others and I apologise if I've upset anyone. But I really don't see how DP or anxeity is an illness when it's a response to emotional problems.


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## Guest (Sep 13, 2011)

Violetgirl,
I'm not upset. And we all have our own interpretation of things. And this comes from our OWN personal experience. [PS, thanks for reading my posts, LOL. Many say tl:dr. They are also a way to test my knowledge on a topics dear to my heart. Psychology, neurology, anthropology, primatology, forensics! I should have been Clarice Starling at Quantico.]

I recall one woman who had a psychotic depression as a teen. She is now a neuroscientist and has a full, incredible life. But a persisting SYMPTOM for her was "my hands feel like dough." THAT is a perceptual distortion. She also did not have an abusive childhood or any particular issues to sort out.

She would not describe it as an emotion. Also, she went into neuroscience obviously for a VERY personal reason. Bless this woman! Who knows DP/DR and is a researcher!

I also know of another individual from this board who is completely recovered from DP/DR through psychoanalysis. She came from a crazy family. However, she (last time I spoke to her and she is older than I am by a few years) still has a compulsion to cut ... it's like an addiction. It serves no purpose. But she considers herself fully cured from DP/DR and I believe her .... many years of it.

Also, both noted of me that they were nowhere near as anxious as I am, by leaps and bounds. And one had no depression. I have clinical depression and severe anxiety I recall forever.


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## violetgirl (Apr 11, 2011)

Dreamer* said:


> Violetgirl,
> I'm not upset. And we all have our own interpretation of things. And this comes from our OWN personal experience.
> 
> I recall one woman who had a psychotic depression as a teen. She is now a neuroscientist and has a full, incredible life. But a persisting SYMPTOM for her was "my hands feel like dough." THAT is a perceptual distortion. She also did not have an abusive childhood or any particular issues to sort out.
> ...


I know that very well! Self-harm goes from a coping mechanism, into a full blown out of control addiction. Completely takes over!

Dreamer, do you know how we could set up a DP organisation? That people would take notice of?


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## Guest (Sep 13, 2011)

Dreamer* said:


> Violetgirl,
> I'm not upset. And we all have our own interpretation of things. And this comes from our OWN personal experience. [PS, thanks for reading my posts, LOL. Many say tl:dr. They are also a way to test my knowledge on a topics dear to my heart. Psychology, neurology, anthropology, primatology, forensics! I should have been Clarice Starling at Quantico.]
> 
> I recall one woman who had a psychotic depression as a teen. She is now a neuroscientist and has a full, incredible life. But a persisting SYMPTOM for her was "my hands feel like dough." THAT is a perceptual distortion. She also did not have an abusive childhood or any particular issues to sort out.
> ...


EDIT: again. Interpretations by others make me research more. A passion of mine. The thing is, no one can be an expert in all of these fields, it takes a lifetime of learning.


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## Guest (Sep 13, 2011)

violetgirl said:


> I know that very well! Self-harm goes from a coping mechanism, into a full blown out of control addiction. Completely takes over!
> 
> Dreamer, do you know how we could set up a DP organisation? That people would take notice of?


Oops, I messed that up.

I have tried over the past decade really to see how this can get out. If I won the lottery I would immediately start a .org One really needs to establish a non profit and I have learned a lot from NAMI re: doing this, but it is a full time effort involving numerous individuals, some of whom MUST get paid.

My goal was first my website, educating doctors/professionals, also wanted to present at the NAMI Convention in 2006. That fell through for unfortunate reasons. However, I have a goal of next year having a booth at my State NAMI and asking a doctor from the University of Michigan to speak on DP/DR. My medical resident is fascinated by it, but he says he was taught NOTHING about it in medical school save as a secondary symptom to panic attacks.

And as I said, I was interviewed by "Elle" magazine in 2006. I have such terrible anxiety it is difficult for me to do public speaking, and I used to act and sing! If I can do small engagements, that is a goal.

If I can use NAMI as a platform ... for me that is my idea. As the project gets developed I will ask for participants from Michigan first, and then those nearby. Voices. And professionals should speak. I would promote Dr. Sierra's book, Jeff Abugel's book, etc.

I would pay for the booth ... it is expensive. Flyers, handouts, etc. But it can be done. It is a goal of mine.

Damnit I wish I could win about $500,000 in the lottery, LOL. More than enough to start a non-profit.


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## violetgirl (Apr 11, 2011)

Even if we could set up a really basic website where people could post their recovery stories and methods. 
How much would that cost?

It's just that on here, there are so many great ideas and stories but they get lost, or turn into arguements/ debates.


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## Guest (Sep 13, 2011)

Ah, I am also working on a book (which is extraordinarily difficult and might never get published) but THAT is a way to promote an idea. It is also about child abuse.

Jeff Abugel would not be getting the audience he gets without writing two books. He however is a writer and journalist. I can write research papers, it is more difficult to write a memoir.

Meantime, we all need to simply speak out.


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## violetgirl (Apr 11, 2011)

But how can we go about setting up a website?
How did you do yours?

Just have a website dedicated to resources, stories and methods and therapies that do work.


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## York (Feb 26, 2008)

Not having read all of the above posts, I want to remind everyone that there will always be people who think everything needs to be cured with outside interference like medication or electroshock, who thinks brain biology is all nuts and bolts you can manipulate back into place if you only find the right way. Then there's the other ones, like myself, who has recovered more than once, who knows from experience that the chemicals you need to "recover" can be made by you, and will be made once you have the right environment for it.

Feelings are a response to a chemical soup made by your brain. These chemicals not only make you feel things, they also send a message to your brain to strengthen, or weaken different things like the amygdala, or neural pathways.

It's proven that glands in your brain will shrink when you have high anxiety over time, and scientists have told us that's the cause for us having anxiety, like a birth defect. 
Now on the other hand it's proven that people who attend talk therapy "re-grow" these glands to normal size as anxiety decreases.

It's impossible to separate psychology from biology. Whatever has the power to change your thoughts, has the power to change your biology.
You can do it artificially, but chances are great you will fall into old thinking patterns once you stop or get used to the drugs. With talk therapy or emotional release, you learn to think differently, you change your basic belief system, so your new healthy thoughts will stay with you.

If you understand that it's a symbiosis between your outer and inner experiences, you all of a sudden get a lot of power over this. Sometimes medication enables you to go out and have those experiences you need to get well again, so it's not wrong to take drugs when you're tied on your hands and knees by anxiety.
But to really heal, you need more.


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## violetgirl (Apr 11, 2011)

York said:


> Not having read all of the above posts, I want to remind everyone that there will always be people who think everything needs to be cured with outside interference like medication or electroshock, who thinks brain biology is all nuts and bolts you can manipulate back into place if you only find the right way. Then there's the other ones, like myself, who has recovered more than once, who knows from experience that the chemicals you need to "recover" can be made by you, and will be made once you have the right environment for it.
> 
> Feelings are a response to a chemical soup made by your brain. These chemicals not only make you feel things, they also send a message to your brain to strengthen, or weaken different things like the amygdala, or neural pathways.
> 
> ...


Yep, I agree with this a million percent.

I'm not judging anyone who takes medication, but I think in the long term, the side effects and the further effect it has on your brain is not worth it. Plus, your brain is already overloaded, so why layer it further with chemicals?
Every time I complained about my anxeity to the doctors, they chucked pills at me. None helped in the long term.

And as I said, and you seem to be as well, as soon as you come off the pills, the old stuff will come back, maybe even worse.

I have found many healthy wayt to combat my anxiety/ DP, and it's empowering to have those tools in your mind to cope with panic attacks etc when they happen.


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## York (Feb 26, 2008)

Why is it so goddamn hard for people to get that dp is a defense mechanism of the brain? It's not a feeling, it's feelings and thoughts you get from having a brain that all of a sudden function in a different mode than you're used to. You get more anxiety, you become neurotic, your imagination runs wild, all of which sets off new emotional responses. Dp is a term used to describe how your brain functions after being hit by extreme stress + the following thoughts and emotions.

Neurosis from being dp'd is why people recover once the fear is taken away, or once they have an a-ha moment about their own life, past experiences, present experiences or whatever.

People who research the neurology of this the most and for the longest time, are the once who will recover last.
It's a dead-end street. It's like smashing open your iphone and shuffling the parts around on your kitchen table to get to your photo album, when all you needed to do was look at the picture on the screen and run your finger over it in the right direction.

We are thoughts, thought rule us.

That being said, anxiety and unhealthy thoughts can also come from heavy metal poisoning, poor diet and the likes. There is not one answer.


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## violetgirl (Apr 11, 2011)

York said:


> *Why is it so goddamn hard for people to get that dp is a defense mechanism of the brain?* It's not a feeling, it's feelings and thoughts you get from having a brain that all of a sudden function in a different mode than you're used to. You get more anxiety, you become neurotic, your imagination runs wild, all of which sets off new emotional responses. Dp is a term used to describe how your brain functions after being hit by extreme stress + the following thoughts and emotions.
> 
> Neurosis from being dp'd is why people recover once the fear is taken away, or once they have an a-ha moment about their own life, past experiences, present experiences or whatever.
> 
> ...


Totally. But I think for some, maybe it's some kind of denial, maybe they don't want to face up to trauma, emotional issues because they are painful. So it's more comforting to believe that it's an 'illness'. I have no idea.

I can understand people manically researching into the neurology of the brain, as some kind of control or something.

But as I said, and you are too, it's an emotional response/ defence to underlying issues. This is why I say that DP is not a disorder 'on it's own'. In that it's supported by disordered thinking, unresolved trauma etc.

I will say that proper nutrition is important, especially B12 and Omega 3. Everyone would benefit from taking these, not just people with DP. Conditions like coeliacs/ b12 deficincies can cause neurological symptoms similar to DP- brain fog, confision etc


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## gill (Jul 1, 2010)

The problem with calling it a defense mechanism is that this implies there's something which the DP is currently defending against, when this doesn't have to be the case. If you experience some intense stress, then DP along with it until the stress is gone, it could be looked at as a defense. But if that stress is long gone, and yet the DP remains, there's nothing it's defending against. Then it can just be an after-effect of that stress, long-term changes in the brain in response.


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## PhoenixDown (Mar 3, 2011)

Anyway, this post was never meant to be about personal opinions on the cause of DP. The point was to start taking action with respect to awareness and raising money to fund research. I think this site as well as Dreamer's site has already done a lot. But I mostly see _individuals_ making a stir, as opposed to a community causing a ruckus. I think a website would be helpful (anyone have those skills?), posters, pamphlets for sufferers and professionals. Perhaps links to published papers on DP to present to unknowing psychiatrists. I am willing to do a good part of the writing for any of the materials, as that is where my skillset lies. Obviously we are all expending energy writing posts on this site - perhaps it would be more productive if we were to put that energy towards a cohesive group project.


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## gill (Jul 1, 2010)

Welp, good luck with that. I dont see much point myself. I had no problem finding a doctor who knew about DP....


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## violetgirl (Apr 11, 2011)

gill said:


> The problem with calling it a defense mechanism is that this implies there's something which the DP is currently defending against, when this doesn't have to be the case. If you experience some intense stress, then DP along with it until the stress is gone, it could be looked at as a defense. But if that stress is long gone, and yet the DP remains, there's nothing it's defending against. Then it can just be an after-effect of that stress, long-term changes in the brain in response.


In my opinion, the brain kind of gets used to it and maybe doesn't know when to switch off from it. Like with a lot of coping mechanisms,-alcoholism etc, it begins to 'help' then doesn't know when to switch off. Also as you say, neurological changes do happen with DP which are hard to shift. That's why IMO it's one of the hardest coping mechanisms to cure, as it's so hard, when you have it, to even see where it starts and ends.

*PhoenixDown* That sounds good. As I said, there's so much good info on that gets lost, and it would be good to collate recovery stories, methods that have worked, ideas etc all in one place. I have no idea how much a website would cost to run, maybe Dreamer could tell us how to set one up. Make a thread asking people with skills that could point us in the right direction. Or to set up a legit DP Organisation and register it. When I was researching during my recovery, anything about DP was in bits and pieces, mainly on anxeity sites, and some forums. Or listed alongsisde personality diorders, DID, trauma etc. Maybe set up a brainstorming thread, see if we can get something started.


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## RamonX (Feb 10, 2011)

Phoenix, I am completely with you on this, I have been campaigning here in Holland for almost twenty years now, and although the situation is much better compared to then, with much more research being done, DP/DR is still à blind spot in psychiatry. Dreamer has also made a huge effort towards acknowledgement of DP, and so have others, but there is a lot more to be done. I get the feeling though that there is some momentum going on, and this is à good time to push through.

To find usefull strategies, it may help to first identify the factors that may hamper progress in the acknowledgement of DP as a real cause of suffering. Why is it so hard for researchers, psychiatrists and psychologists to deal with this? I think there is much to be learned from the way Chronic Fatigue slowly has gained more serious attention through the years. It show at least one important issue: people tend to be conservative, ,and likewise researchers, psychiatrists, psychologists, therapists, doctors and specialists tend to be conservative as well. They like new technologies and medications etc, as long they don't have to change their belief systems. Researchers that propose new models always have a though time getting their research published in scientific journals, because there is this massive force trying to keep things as they are. New facts are only welcome when they fit in the existing models. Therefor things like chronic fatigue and depersonalization will be treated as something that should fit in the old models. So doctors will say: chronic fatigue is a symptom of depression, because we don't know about anything else that could cause it, and psychiatrists will say: oh well I know that this depersonalization symptom sometimes happens with depression or panic disorder, so if I treat those, the DP should also dissappear. And when it doesn't they will think, ok it sounds a bit psychosis like, I'll put him on antipsychotic medication. Considering that your overall view might be wrong takes à lot of energy and can make people insecure, and that is why à vast majority of people in every part of society will try to oppose this.

Ok I see I have to go now, but I will come back to this.


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## Guest (Sep 15, 2011)

violetgirl said:


> So it's more comforting to believe that it's an 'illness'.


agree









this is what I was talking about mentioning responsibility. I got hated on like I raped children haha

people never forget, that a psychiatrist's job is to try to help people who go there and tells TOTAL NONSENSE. if he "understands" DP that doesn't mean DP isn't bullshit.

if you go there, and say "I have DP, I feel like I'm not real, my brain is in defense mode", you will get treated, just like when you go there and tell "Doctor help me, monsters live on the roof of my house and they listen to heavy metal too loud I can't sleep".

their job is to not treat you like you tell bullshit, even if you do

[grabs a popcorn and waits for the hate]


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## violetgirl (Apr 11, 2011)

Lowrey said:


> agree
> 
> 
> 
> ...


But as I said. People may want to believe it's an illness, as they may not want to face up to painful things, just yet. Just showing them options, for when they are ready is all people can do. Let them come to this conclusion in their own time.
Or even, don't even realise they were raised in an abusive family (everyone thinks their family is normal). Or might not remember the abuse.
Emtional and verbal abuse is a lot harder to 'spot' than other types.

I dunno, but sometimes people may take 'take responsibility' as taking responsibilty for something thats' their fault. I think sometimes the way people word things, it comes out sounding worse than intended. I think what you mean is 'don't take pills you can do this yourself?'

People should know that getting rid of DP is within their power, and if you search this site there are loads of recovery stories to take inspiration and methods and ideas from.

What do you mean by the bit in hightlight?

Umm, I'm not so sure what you mean by the last sentence? Not being picky or rude, just not sure of the analogy you're trying to make. If it's what I think it is, doctors are a lot more knowledgeable about dissociation (not as much as they should be). They'd easily pick out the DPer (I feel unreal) from the psychotic person (there are monsters on my roof). The DPer is well aware of the change in realily. The psychotic person totally believes that there are monsters on the roof.

My psychologist, who i'm starting to see again, treats dissociation/ PTDS etc so she knows about depersonalisation and how people get it for different reasons. The doctors who tend to know about DP are ones that specialise in trauma/ PTSD/ personality disoders. Mainly the disorders that are caused by abuse and end up dissociating.


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## RamonX (Feb 10, 2011)

> Why is it so goddamn hard for people to get that dp is a defense mechanism of the brain? [\quote]
> Wow, you probably don't mean it to, but that sounds quite condescending, and it is not the issue that divides people on this forum either.
> I think that almost everyone acknowledges that DP can be a defense mechanism and that it often is. But the question is: does it still function as à useful mechanism after months of constant DP. Another question is: what does defense mechanism actually mean. Is it a highly developed protective system, or is it à rough disruption that serves to optimize the survival chances of a creature in great danger, and can it get stuck after having fulfilled its useful function. Nobody can answer these questions with certainty.
> 
> ...


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## Guest (Sep 15, 2011)

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## Guest (Sep 15, 2011)

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## Guest (Sep 15, 2011)

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## Guest (Sep 15, 2011)

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## violetgirl (Apr 11, 2011)

Lowrey said:


> that's what I say. that they can do this because something they currently do, or don't do, is what creates this feeling. be it constant self-beating, being too strict to themselves, still carrying old pain unneccessarily, not saying fuck-you to someone, forcing something on themselves they don't want to do, repressing something, etc..
> 
> to me, the difference between "I am responsible" and "I have the power to change it" is only a matter of perspective. it's just a philosophical difference imo. the last one sounds better, but they mean the same.
> 
> *and yes, I've seen people here, who I don't wonder for a minute that they have anxiety, or DP. the way they run away from even reading certain opinions is really telltale.*


I'm not totally sure what you mean by this.

But maybe people are scared of what they'll find 'underneath' the DP? Or realise that their 'perfect' family isn't so perfect?

I know that during my recovery, I went into deep denial about things a few times, all my defences cam into play.
Maybe that's what's going on here?


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## Guest (Sep 15, 2011)

> and yes, I've seen people here, who I don't wonder for a minute that they have anxiety, or DP. the way they run away from even reading certain opinions is really telltale.


Wow, this thread has really taken off. *Violetgirl, that comment may have been partly intended for me -- not sure, Lowrey you lash out at everyone. And Lowrey, the reason I can see the statement is because it shows as a quotation in Violetgirl's post.*

Lowrey, you are the only person on this board whom I have blocked. Why? You are vulgar, rude, insensitive in general, not just about DP/DR. Simple. I'm simply weary of your ignorance. You have plenty of others here, who think exactly the same way I do you can torture all you want ... or perhaps the remark is directed at Ramon, but I doubt it. I'm starting to get the feeling that Visual is correct. Problem with women, Lowrey?

But simply I am blocking a troll. I'm bored to death. And have done so on occasion.

*@Ramon* again. Spot on with all you've said. Getting CFS to the attention of doctors ... a good analogy/metaphor whatever. My goal is for the 2012 NAMI Michigan Convention to get a few professionals who understand DPD and have even treated INPATIENTS (and it isn't easy getting a hospital bed for a "non-existent, non-medical" disorder), maybe see if Jeff Abugel can come out, and speak (unless I have a heart attack), but I plan to spend some $ on that.

It takes seed money -- and one would want seed money from a philanthropist who is affected by this and that is a tough thing, or a large business, I have one in mind. Grant money is drying or has dried up, but that is another option. Also, it is extremely difficult to coordinate a .org or a booth, or a presentation with people all over the place, hence why I would ask some Michigan DPers to participate. Also, books to promote, BY PROFESSIONALS, help. My therapist was even saying she would love to have Dr. Sierra do rounds at U. of M., however how do we pay his plane fair from London?

Indeed there was a time when it was believed that schizophrenia was caused by a "cold, schizophrenogenic mother" I believe. Well, they had that one all wrong. There is no cure or perfect treatement for schizoprhenia now. But at least we know it isn't caused by a "cold mother." NAMI was established by 3 such mothers, sitting around having coffee in California, trying to get help for their own kids.

Self advocacy. It takes a ton of work. But I agree with Ramon it is time for another push.
I have a lot more to look into, but @a year until next Michigan STATE Nami meeting (a good platform for a large audience) could lead to the same present ation at the National Convention which brings in over 2,000 people. One can only keep trying.

It IS difficult however when we are not only in different states here in the US, but in other countries!

Next year's NAMI National Convention is in Seattle, WA if anyone is interested. One can always attempt to set up a presentation there .... the forms to complete come online soon, and the deadline is 12/15 for all materials. Only a few select presentations are chosen. One wonderful one was The Psychiatric Service Dog Society -- now THAT brought a big audience. You need things to hand out, books to sell, people with stories who will talk. And they had TWO dogs, Rhodesian Ridgebacks. And they were beautiful and of course attracted much attention. These dogs are used for autistic children, or individuals with schizophrenia or epilepsy who may get lost, disoriented. Like a leader dog for the blind. THe organization is also established though. Wonderful group! That's what I've learned through NAMI.

http://www.nami.org For those in the US look at your local, and State NAMI for ideas on this.


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## Guest (Sep 16, 2011)

http://mhselfhelp.org/

Another resource for helping individuals get the word out on various mental illnesses, etc. in their community.

To be honest, people I have worked with (tried to get Joey Pantoliano's documentary "No Kidding, Me Too!" to the Michigan Theatre in 2009) ... through the Depression Center at U. of M. My GOD. Setting up an event where Joey would attend and speak about the documentary and his depression -- draw a big audience as he is a known actor (Cypher in "The Matrix", Ralphie on "The Sopranos", the bad guy in "Memento", etc.), or members of the documentary would attend and speak involved my needing assistance from a young woman with an MBA in Public Relations. Her job is to coordinate this stuff, and she gets paid and works 9 hours a day ... or more.

And it never panned out. $$$$$$$.

This is the sort of organization and time for a presentation which might be funded by an established Non-Profit.
Getting a 45 minute program together with:
1. Key Speaker -- a professional, M.D.
2. A celebrity with the disorder -- this can include a writer (such as Jeff Abugel)
3. A Power Point Presentation by the Key Speaker - and Power Point copied and stapled for all members attending the meeting which could be 50
4. A "consumer of health care" such as one of us here to speak, with others in the audience to represent numbers - and there are professional speakers "In Our Own Voice" -- a program my anxiety made impossible to do. I did do the weekend training seminar though.
5. A book to sell/promote geared to professionals - Abugel, Sierra, Simeon ... but a new book is key, or a new medical publication ... or a published memoir, a documentary (I've also been in one that didn't get off the ground but it was a great experience)
6. Flyers on information to hand out -- at least twice the number of the estimated group

You can see this is not a small matter. I have tried very hard 3 times to get something like this together. I have not been successful, but I learned something new and important each time. I really hope to make SOMETHING happen by 2013 -- National NAMI Convention, but am going for a lower level presentation now at the State level.

Also, consider location, transportion, lodgings, publicity (posters/more flyers/internet), the media to cover the event. I've learned that it is a full time job to do something like this.

It should happen. I'm still trying.


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## PhoenixDown (Mar 3, 2011)

Hey Dreamer,

I'm gonna hit you up about this little push as you seem to have a solid grasp of options and a realistic sense of what can and can't be done. I imagine starting locally is the best approach for now. I'll be in touch.

best,

Phoenix


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## Guest (Sep 17, 2011)

Dreamer* said:


> Wow, this thread has really taken off. *Violetgirl, that comment may have been partly intended for me -- not sure, Lowrey you lash out at everyone. And Lowrey, the reason I can see the statement is because it shows as a quotation in Violetgirl's post.*
> 
> Lowrey, you are the only person on this board whom I have blocked. Why? You are vulgar, rude, insensitive in general, not just about DP/DR. Simple. I'm simply weary of your ignorance. You have plenty of others here, who think exactly the same way I do you can torture all you want ... or perhaps the remark is directed at Ramon, but I doubt it. I'm starting to get the feeling that Visual is correct. Problem with women, Lowrey?


Why you didn't block Blarbs then? he wasn't a troll, but I am, right?







epic fail.

don't get childish and personal, I would destroy you.

here is the next idea of your loved psychiatrists who believe in your "brain disorder" : Internet Addiction Disoder - of course, based on scientific research.

the next episode of the excuse factory.


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## Guest (Sep 17, 2011)

Ooops double post ....


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## Guest (Sep 17, 2011)

PhoenixDown said:


> Hey Dreamer,
> 
> I'm gonna hit you up about this little push as you seem to have a solid grasp of options and a realistic sense of what can and can't be done. I imagine starting locally is the best approach for now. I'll be in touch.
> 
> ...


Yes, this is the way to go, I believe it. I have bitten off more than I can chew in attempting larger projects -- though it DID turn out that Joey Pantoliano spoke at the NAMI State Convention and showed is wonderful documentary there -- he is my hero -- but even his organization is in financial trouble -- he is a character actor, he has given so much ... now Glenn Close is working with her bipolar sister Jesse for BringChange2Mind. Working with these organizations teaches some tough lessons on the power you need to have, and $$$$$$$ to get the word out in a professional way.

And smaller meetings, etc. are good "dress rehearsal" for larger ones. If you are near a local NAMI, I encourage you to join. If you feel you would like to learn to speak publically -- which I did, but it also focused on NAMI activities, you can be trained at a State level for IOOV -- In Our Own Voice. It is free and is completely run buy consumers who speak out on their own behalf, from schizophrenia (yes they are quite capable of speaking when on their meds), to bipolar, to depression to anxiety, etc.

Membership in NAMI is what you can afford, or $35.00. I let the $30.00 go to NAMI as charity. I receive all sorts of info, it is truly an wonderful group.


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## York (Feb 26, 2008)

I just wanted to add, so no-one misunderstands my post (which sounded a bit angry) that I KNOW very well, from personal experience, that dp is a complex thing.
I've recovered in mysterious ways from it twice, one time it was upon meeting my boyfriend, it just vanished, after being present 24/7 for a month, with the "fog" before my eyes that drove me crazy; It was gone in a second. The other time I recovered upon finding out I was pregnant. I had severe dp for 4 months, and recovered within a couple of days. i started taking folic acid the same day, maybe that was it, but I truly believe it was something emotional.

"My" dp has always been about emotional stress, stress I'm often not even aware of having; until it's gone. Everyone has emotional stressors, and stress from the environment on top of that, and if you're a sensitive person to begin with, you get more affected.

That's why I have a hard time listening to people who say it's no way dp is stress-related in them, because you just don't know that!
Stress, being it biological or emotional, builds up and wears you down. Some people have a lifestyle or personality where they are able to discharge this stress as it comes along, others suffer with it and can't get a break.

Dp happens when your system has reached it's maximum capacity for coping with the stressors, and then will stay present until you can start functioning in a different state of mind again. Just read about brain waves and how they affect people. It's clear that there's a set of rules all of our minds follow, so if you have "a" you'll get "b".

O.k, I'll just write a book.

About the real topic of the thread, I think we should all have an opportunity to write down our symptoms and what works and have someone analyze it. That's what I miss. I think if everything got out in the open, without trying to make it fit into the established view of brain function, we'd come a long way in finding treatment.


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## dewofpee (Sep 20, 2011)

Dreamer* said:


> Yes, this is the way to go, I believe it. I have bitten off more than I can chew in attempting larger projects -- though it DID turn out that Joey Pantoliano spoke at the NAMI State Convention and showed is wonderful documentary there -- he is my hero -- but even his organization is in financial trouble -- he is a character actor, he has given so much ... now Glenn Close is working with her bipolar sister Jesse for BringChange2Mind. Working with these organizations teaches some tough lessons on the power you need to have, and $$$$$$$ to get the word out in a professional way.
> 
> And smaller meetings, etc. are good "dress rehearsal" for larger ones. If you are near a local NAMI, I encourage you to join. If you feel you would like to learn to speak publically -- which I did, but it also focused on NAMI activities, you can be trained at a State level for IOOV -- In Our Own Voice. It is free and is completely run buy consumers who speak out on their own behalf, from schizophrenia (yes they are quite capable of speaking when on their meds), to bipolar, to depression to anxiety, etc.
> 
> Membership in NAMI is what you can afford, or $35.00. I let the $30.00 go to NAMI as charity. I receive all sorts of info, it is truly an wonderful group.


"run buy consumers who speak out on their own behalf, from schizophrenia* (yes they are quite capable of speaking when on their meds)*"

This is a pathetic and ignorant comment. I suggest you start looking at ethical studies (ones not conducted by Eli Lilly or Astrazeneca). Maybe you could start with the WHO studies that reveal outcomes are better for people who have experienced psychosis if they are *not* exposed to long-term neuroleptic use http://bipolarblast.wordpress.com/2010/05/19/a-schizophrenia-mystery-solved-by-robert-whitaker/. It's quite the opposite of what NAMI bullies- but it's the truth. Even from scientific perspective neuroleptics are not actually "anti-psychotics". They're major sedatives. Nothing more, nothing less. Subjectively, some consumers feel that it was neuroleptics which corrected something. That's their personal business. I'm not anti-drugs. People can take whatever they want. However, science does not support their highly anecdotal claims. That's where the line is drawn. Your statement insinuates that people labeled with schizophenia are "quite capable of speaking when on their meds" is ignorance. You do not know that all people who have these experiences need neuroleptics in order to recover or, according to you, be coherent. You sound like a bully for pharmaceutical companies- not an enlightened, compassionate person who is interested in helping human beings. The latter is certainly something you like to portray yourself as. Unfortunately, you sound just an awful lot like the revoltingly corrupt organization you're involved with.

NAMI Code of Conduct

1. Ignore science and studies
2. Throw in medicalized terms, perhaps the word "neuron", and hope no one with a conscience in the audience can tell the difference between exploitation/fraud and actual science
3. Bully anyone who disagrees. Methods 1: Shriek that they're a Scientologist. Method 2: Yell that they're the reason some people commit suicide. 
4. Repeat!

Fact: If NAMI actually cared they wouldn't be reaping huge amounts of money from pharmaceutical companies that are prescribing drugs that are *proven to not work.*

"&#8230; it turns out that there is currently no scientific consensus that depression is linked to serotonin deficiency or that SSRIs (Selective Serotonin Reuptake Inhibitors) restore the brain's normal 'balance' of this neurotransmitter. The idea that depression is due to deficits of serotonin was first proposed by George Ashcroft in the 1950s, when he thought he detected low levels in the brains of suicide victims and in the spinal fluid of depressed patients. Later studies, however, performed with more sensitive equipment and measures, showed no lower levels of serotonin in these populations. By 1970 Ashcroft had publicly given up on the serotonin-depression connections. To date, no lower levels of serotonin or 'imbalance' of the neurotransmitter have been demonstrated in depressed patients. The American Psychiatric Press Textbook of Clinical Psychiatry states simply, 'Additional experience has not confirmed the monamine (of which serotonin is a subgroup) depletion hypothesis.'" - from Crazy Like Us by Ethan Watters

George Ashcroft moved on from this theory...why can't they? Cold hard cash, that's why. And SSRIs are just one of psychiatries fraudulent "treatments".

When I first met Gale at the NAMI conference, she was enthusiastic about being a depersonalization poster child, willing to trot herself out for journalists and explain, over and over again, what the disorder is like and delve into her traumatic childhood with her narcissistic mother and absentee father. Several months later, I checked in with her and she e-mailed me, "*I'll be honest, I'm ready to give up on the NAMI thing*. I'm tired of being ill. Really am." It reminded me of something that she had said in the lobby of the Hilton in a brief moment of despondency: "One day, I hope I forget all about this and don't care anymore."

Well, do us a favor then. When did you say that- 2007? Please, if only for the sake internet, get on with it already. If not the internet, try doing it for _moral reasons._


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## Visual (Oct 13, 2010)

dewofpee said:


> "run buy consumers who speak out on their own behalf, from schizophrenia* (yes they are quite capable of speaking when on their meds)*"
> 
> This is a pathetic and ignorant comment. I suggest you start looking at ethical studies (ones not conducted by Eli Lilly or Astrazeneca). Maybe you could start with the WHO studies that reveal outcomes are better for people who have experienced psychosis if they are *not* exposed to long-term neuroleptic use http://bipolarblast.wordpress.com/2010/05/19/a-schizophrenia-mystery-solved-by-robert-whitaker/. It's quite the opposite of what NAMI bullies- but it's the truth. Even from scientific perspective neuroleptics are not actually "anti-psychotics". They're major sedatives. Nothing more, nothing less. Subjectively, some consumers feel that it was neuroleptics which corrected something. That's their personal business. I'm not anti-drugs. People can take whatever they want. However, science does not support their highly anecdotal claims. That's where the line is drawn. Your statement insinuates that people labeled with schizophenia are "quite capable of speaking when on their meds" is ignorance. You do not know that all people who have these experiences need neuroleptics in order to recover or, according to you, be coherent. You sound like a bully for pharmaceutical companies- not an enlightened, compassionate person who is interested in helping human beings. The latter is certainly something you like to portray yourself as. Unfortunately, you sound just an awful lot like the revoltingly corrupt organization you're involved with.
> 
> ...


*there is currently no scientific consensus that depression is linked to serotonin deficiency*

The increase of serotonin in synapses is within hours - a timeframe common to most meds. The effects of SSRIs are 'downstream', thus it takes weeks to 'see results' -- somewhat 'proving' your concern.

*prescribing drugs that are proven to not work*

Depends on how you describe 'work'. There is no doubt that $$$ play a big role what people take. Even the language is distorted. For many drugs they use the word 'addiction', but for SSRIs they use the words 'discontinuance problems'.

Nevertheless, some people feel benefited. Others continue to use the med to blunt issues that they should face since it is easier, they don't have time and/or they cannot afford rehabilitative therapies.

Can't speak for NAMI as have no experience with them.

As for DP, there is no established treatment protocol.

As for the topic, *Cure DP Campaign* - what is wrong with awareness?

Sympathy is helpful. Ignorance in not. All people need to feel dignity and recognition. When one's problems are belittled, it hurts, isolates, and makes one more thing to interfere with recovery.


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## Guest (Sep 20, 2011)

dewofpee said:


> "run buy consumers who speak out on their own behalf, from schizophrenia* (yes they are quite capable of speaking when on their meds)*"
> 
> This is a pathetic and ignorant comment.


I simply want to state here that I wrote this quickly. Many here call individuals who have schizoprhenia "schizo" ... I was replying too rapidly. The bottom line is individuals with schizoprhenia are quite capable of speaking up for themselves and are members of NAMI themselves. Look up Moe Armstrong and Elyn Saks as examples.

Unfortunate sentence. I didn't need to be attacked.


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## Guest (Sep 20, 2011)

> When I first met Gale at the NAMI conference, she was enthusiastic about being a depersonalization poster child, willing to trot herself out for journalists and explain, over and over again, what the disorder is like and delve into her traumatic childhood with her narcissistic mother and absentee father. Several months later, I checked in with her and she e-mailed me, "I'll be honest, I'm ready to give up on the NAMI thing. I'm tired of being ill. Really am." It reminded me of something that she had said in the lobby of the Hilton in a brief moment of despondency: "One day, I hope I forget all about this and don't care anymore."


Simply have to respond more clearly.
This reads as if dewofpee met me. She didn't. And she has taken quotations from the interview I was given out of context.

What you missed in the last part of the article was I don't want to have to have DP/DR anymore and that then, if others did not have it, I wouldn't be trying (with much difficulty as noted in this thread) to get the word out, when mental health professionals and neurologists are all over the place on dissociation, and don't have the answers to the brain.

The journalist called me a "poster child." I didn't care when asked by the fact checker. Those were her words.

Also, the article was about DP, not about NAMI. I met the journalist at the convention as it was convenient for her. The magazine flew her from NYC to come down for a day with me.


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## dewofpee (Sep 20, 2011)

Hey Dreamer,

Sorry I misread the article. I'm actually new to this forum and came across your website because you make so many posts. I don't know you beyond posts. I do not claim to know you. I read in one of your random posts that you were interviewed for Elle and then, intrigued, searched for the article. I do find it bizarre that your personal history very closely (in terms of childhood) matches the other woman in the article. I'm actually an ex-psych patient/consumer who is vehemently against NAMIs assault on science, truth, and human beings. If someone on this forum talked about NAMI half as much as you- I would be equally critical of them. This isn't _necessarily _ a direct attack on you- but it is most certainly an attack on the main stream mental health industry. If you're going to be talking about such an organization don't expect yourself to be immune to criticism.

Also- the Elle article does not criticize NAMI so I did not "get all of this" from an Elle article. The article was not about NAMI. The organization is just mentioned in passing. Unfortunately, according to you, I mixed you up with a rather similar character in the article.

Are there any points I make about NAMI in my post that you disagree with? I made the previous post because I found the statement you made that implied "people with schizophrneia are only coherent when on neuroleptics" absolutely ignorant. In my view, someone that would make a comment like that is a bigot and a liar. If you'd like to be immune to criticism in the future try not blindly spewing propaganda from NAMI everywhere. It would probably help.


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## dewofpee (Sep 20, 2011)

dewofpee said:


> Hey Dreamer,
> 
> Sorry I misread the article. I'm actually new to this forum and came across your website because you make so many posts. I don't know you beyond posts. I do not claim to know you. I read in one of your random posts that you were interviewed for Elle and then, intrigued, searched for the article. I do find it bizarre that your personal history very closely (in terms of childhood) matches the other woman in the article. I'm actually an ex-psych patient/consumer who is vehemently against NAMIs assault on science, truth, and human beings. If someone on this forum talked about NAMI half as much as you- I would be equally critical of them. This isn't _necessarily _ a direct attack on you- but it is most certainly an attack on the main stream mental health industry. If you're going to be talking about such an organization don't expect yourself to be immune to criticism.
> 
> ...


Also- stuff like this "*God help you if you ever have a child or family member with a serious mental illness. You will understand. Then.*" Is exactly like shrieking that someone is a Scientologist. It's something you say to belittle someones argument. It's cheap, it's fear tactics, and it's wrong. Awful you've picked up so many tricks from NAMI. Also, cats are anecdotal linked to "schizophrenia". I really don't care if blindness is either. The homeless people on the street and the people in jail? Yeah, most of them are highly enmeshed in psychiatry before these things happen. It's a curious sociological phenomena that where psychiatry goes, societal decay follows. Homelessness is not a lack of neuroleptics. Most homeless people on the streat are already on neuroleptics. And another fact: many of people who commit violent crimes were on some form of psychiatric medication at the time. Get another argument.

You do not know my families history of "mental illness". My relatives have a long and sordid history of suicide and other problems that goes back to the 1800s. However, that shouldn't even factor into an argument about the corruption of main stream mental health industries. Well, here is some news for you: not everyone who encounters these experiences suddenly loses twenty IQ points and suddenly believes NAMI is trying to help them. Some even go on to do go honest work.

http://recoveryfromschizophrenia.org/about-ron-unger/

http://www.rufusmay.com/

I also resent you comment the myth that "new" neuroleptics are much better than the older ones. That is a bald-faced lie.


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## dewofpee (Sep 20, 2011)

What is with this place and double posts.


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## Guest (Sep 20, 2011)

......


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## Guest (Sep 20, 2011)

Offer a suggestion to the OP on how to get the DP word out. Then I'll listen to you ... oh, sorry, I am sick of this place.
It was a super site in the past. Very unfortunate. I refer doctors here, and they see stupidity and don't take DP seriously.


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## Guest (Sep 20, 2011)

......


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## Guest (Sep 20, 2011)

*Phoenixdown*, my sincerest apologies that this got hijacked.

Anyone who is a friend of mine here knows how to get in touch with me.
Love to all of you, and keep fighting.
Love,
Sandy
We will get a campaign going if it kills us.


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## dewofpee (Sep 20, 2011)

Dreamer* said:


> *I can't answer all of this as you lied when you said you met me in person. Why in the world would you say that? Talk about misleading people. Also, what "other woman" in the article? I was the "sample" person that the journalist was REQUIRED by the magazine to focus on. Others are alluded to but not given names. You did not even read the entire article!
> 
> ALSO, I DID NOT WRITE THE ARTICLE. The journalist is not familiar with NAMI. She chose the topic and interviewed many different people. As she was in NYC it was easy for her to fly down to meet me at the Convention and stay in a neighboring hotel. Her "slant" on the article was dictated by the desires of a woman's magazine, the only one that would take the story if it was "perked up" ... she tried for 2 years before that to sell it to innumerable other magazines.*
> 
> ...


I'm well aware you did not write the article.

"*If I do not agree 100% with NAMI, that doesn't mean it is like Scientology.*"

*That is not what I am said at all.* What I was said was that people involved with NAMI shriek that anyone who disagrees with their model of "mental illness" must be a Scientologist. They also say things like: hope you don't have a mentally ill loved one, then you'll understand! (sound familiar, Dreamer?) They do this to bipass the question or inquiries the person has raised. They do it because they have no argument and it's easier for them to bully and intimidate people instead of confronting scientific facts and rigorous international studies. It's exactly the route you took to defend against my criticism. It's because you have no defense that you have to resort to stuff like that.

I *never* claimed to have met you or known you. Ever. Not once. Where are you getting that from? Please quote. And if you believe that NAMI is scientifically oriented then I'm afraid we'll have to end the argument there. I sincerely hope you do ponder some of the points I made about absolute corruption of the organization, however.


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## dewofpee (Sep 20, 2011)

Visual said:


> *there is currently no scientific consensus that depression is linked to serotonin deficiency*
> 
> The increase of serotonin in synapses is within hours - a timeframe common to most meds. The effects of SSRIs are 'downstream', thus it takes weeks to 'see results' -- somewhat 'proving' your concern.
> 
> ...


Yes, serotonergic drugs raise serotonin levels in all people. You're correct. Bravo. The problem is that serotonin has never been linked to depression or anxiety scientifically- as much as people have tried. The man who erroneously linked them later discarded the theory and recognized the error. Your argument basically ends with "but some people feel they work or that they numb them until they can get help.". Yes, I agree. Some people do think that. But that's not the point. The point is that NAMI, or anyone for that matter, should not be parading anecdotal evidence around like it's science. It's called being unethical.


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## RamonX (Feb 10, 2011)

dewofpee said:


> Yes, serotonergic drugs raise serotonin levels in all people. You're correct. Bravo. The problem is that serotonin has never been linked to depression or anxiety scientifically- as much as people have tried. The man who erroneously linked them later discarded the theory and recognized the error. Your argument basically ends with "but some people feel they work or that they numb them until they can get help.". Yes, I agree. Some people do think that. But that's not the point. The point is that NAMI, or anyone for that matter, should not be parading anecdotal evidence around like it's science. It's called being unethical.


No that is not correct, there is still debate whether SSRIs raise serotonin levels, and serotonin has been linked to anxiety and agression in many research articles, but it turns out that reality is so complex that we still don't know what it all means. There is so much conflicting evidence, so much bad research and so much statistical trickery, that it is impossible to know what SSRI's actually do and how and if they work in the end. The same is true for every psychoactive medication out there, which is unsettling to say the least.

I am actually very very critical of the way psychiatry is practiced at the moment, but I think part of the problem is that many of the people who oppose these practices, choose to polarize, and viciously attack everyone that does not totally agree with them. You present yourself as a prime example of this. I agree it is a crying shame how Big Pharma has corrupted science, but it does not mean that every psychiatrist or campaigner for an organization like NAMI is corrupt or dumb or whatever, nor that they agree with everything an organization stands for.

If you have read Dreamers posts, like you say, I can't see how you can come to any other conclusion than that she is à genuinely caring person that defies terrible anxiety and depersonalization to fight for the wellbeing of people with psychiatric problems. She chooses to try influence established psychiatry through NAMI, because she believes it is an efficiënt way to get heard, and because she has met interesting people there. It is a choice 
to try and influence an organization from the inside. Her comment on people with Schizophrenia being able to speak for themselves was actually meant as a confrontation on the caricaturistic view of schizophrenia that many people have. Maybe the part on the meds was not the best way to 
put it, but it is what Dreamer has seen in her own family and environment. So I actually think you owe her an apology.

Now on the important issue in all of this. Anti psychotics, do they work, and what do they do in the long run.
Let me say first, that the fact that they are prescribed so easily, so matter of factly, even to little children and for almost every ailment, is à horror.
These meds have very serious side-effects and in most conditions apart from psychosis they have no positive effect at all. There are children that 
are labeled as having ADHD, and when they don't respond to Ritalin treatment, they often get anti psychotic medication as an add on along with benzo's and what more. This has to stop, it is child abuse.

But the main question, what about schizophrenia. I know the article you linked to, and the WHO research. It is very interesting research but the conclusion that long term anti psychotic use makes people worse of in the end is not proven. It could well be the case, but there are other possible explanations as well. This has to be researched much further. The jumping to conclusions here would be the same error that much of the research that you criticise is guilty of. 
My intuition based on 20 years of studying neuroscience and pharmacology research combined with accounts of several people with schizophrenia and psychiatrists treating them gives me the impression that the situation is so complicated, and there are so many contradictions that we must admit that we just don't know. 
There are certainly indications that brain damage caused by long term anti psychotic medication can make the situation worse in the long run, (the same is true for anti depressives), but there is also research, which was not conducted by pharmacological industries that it can protect schizophrenics against deterioration. A good chance both can be true in different individuals. 
I know people who are on low dose maintenance medication who function quite high level, that fall back into psychosis soon after they quit there medication. They have learned the hard way that they have to take this shit. I also know of à man who spent years on the street, filthy and 
bewildered, standing still and mumbling in himself, who now has a job and à home and you can actually speak to him since hè is on medication, I am sure hè would have died within à few years more in the streets.
It is not strange that psychiatrists who also see cases like these are convinced that ongoing medication is necessary. Ofcourse they are not all dumb or evil people without à heart for their patients. 
I think in the end we know so little. The enormous variations in symptoms and illness course in people diagnosed as schizophrenics suggest that this not just one disorder, but probably several. On the other hand different genetic differences cause medication to have different effects in different people and there are many more confusing factors.

The cause of this mess is that less and less research is financed by the public sector. Big companies have there own dynamics, that is independent of the people that work there. À company as such does not have à counscience, the bigger it is, the more this is true, and we can't expect moral behaviour from à system that is not designed to have one. Another cause is that pharmacological science is in crisis, because reality presents à level of complexity that we can't handle yet.

Anyroad, if you don't want to be associated with Scientology, than I would suggest not using their tactics, like bullying. It is not the best way to convince people, unless you are prepared to brainwash them as well


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## dewofpee (Sep 20, 2011)

RamonX said:


> No that is not correct, there is still debate whether SSRIs raise serotonin levels, and serotonin has been linked to anxiety and agression in many research articles, but it turns out that reality is so complex that we still don't know what it all means. There is so much conflicting evidence, so much bad research and so much statistical trickery, that it is impossible to know what SSRI's actually do and how and if they work in the end. The same is true for every psychoactive medication out there, which is unsettling to say the least.
> 
> I am actually very very critical of the way psychiatry is practiced at the moment, but I think part of the problem is that many of the people who oppose these practices, choose to polarize, and viciously attack everyone that does not totally agree with them. You present yourself as a prime example of this. I agree it is a crying shame how Big Pharma has corrupted science, but it does not mean that every psychiatrist or campaigner for an organization like NAMI is corrupt or dumb or whatever, nor that they agree with everything an organization stands for.
> 
> ...


"*There is so much conflicting evidence, so much bad research and so much statistical trickery, that it is impossible to know what SSRI's actually do and how and if they work in the end. The same is true for every psychoactive medication out there, which is unsettling to say the least. *"

Whether they raise serotonin or whether they don't- I could care less at this point, RamonX. And, actually, there is a way to tell if something doesn't work. If almost every single study ever conducted on a pharmaceutical indicates that it doesn't work- it probably doesn't work. SSRIs have no clinically meaningful advantage over placebo. They're based on a mistake made by a scientist named George Ashcroft. One that he later corrected. Please stop trying to "take the middle road" by ignoring logic. It's really nauseating.

This is basically just weak apologetics for a deeply offensive and dogmatic comment. And I absolutely owe no one an "apology". Anyone involved in psychiatric reform is unfairly associated with Scientology- *no matter what tactic they use*. I could send teddy bears and kisses to NAMI and say "Dear NAMI, thank you for listening to Peter Breggin. I'm so happy in all your power your infinite wisdom that you decided against helping to bring back psychosurgery! Love, Dew of Pee." Would that be more appropriate? If it wasn't for "bullies" like me (a.k.a people with morals and half a brain), the corruption of the mental health industry would be ten times worse. If anyone here is genuinely interested in psychiatric reform they should at least read Robert Whitakers work. It's a good a start. It's also a great place to start if you'd like to extend your knowledge of schizophrenia and it's treatment implications beyond the anecdotal "I sort of knew a man once...surely he would be dead without Astrazeneca..."

"*Another cause is that pharmacological science is in crisis, because reality presents à level of complexity that we can't handle yet.*"

This is the saddest comment I have ever read. It attempts to suffocate anyone's concern that pharmacological science is in crisis because the pharmaceutical industry is deeply corrupt- which it is. There are no other reasons. They are not looking to help you. "Oh but dewofpee, it's because it's so complex! They're working on it, I just know it..."

Whatever helps you sleep at night.


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## RamonX (Feb 10, 2011)

dewofpee said:


> "*There is so much conflicting evidence, so much bad research and so much statistical trickery, that it is impossible to know what SSRI's actually do and how and if they work in the end. The same is true for every psychoactive medication out there, which is unsettling to say the least. *"
> 
> Whether they raise serotonin or whether they don't- I could care less at this point, RamonX. And, actually, there is a way to tell if something doesn't work. If almost every single study ever conducted on a pharmaceutical indicates that it doesn't work- it probably doesn't work. SSRIs have no clinically meaningful advantage over placebo. They're based on a mistake made by a scientist named George Ashcroft. One that he later corrected. Please stop trying to "take the middle road" by ignoring logic. It's really nauseating.
> 
> ...


I rest my case, you have proven in every sentence, that you are not interested in change, you just want to kick around you.
You turn around everything I said, a strategy that fundamentalist always use alongside the simplification of reality. 
You call anecdotal, what is just an example. You are confusing an additional reason for the lack of progress with an exuse for the first reason, which it was clearly not. I know Withakers work, I know Breggins. How the hell are you going to convince people of the need for change if you start screaming at everyone that does not share your mantra? Luckily Whitaker and Breggin don't behave like that, because it is obviously not going to amound to anything. In this way you are the one that is suffocating concerns.


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## dewofpee (Sep 20, 2011)

RamonX said:


> I rest my case, you have proven in every sentence, that you are not interested in change, you just want to kick around you.
> You turn around everything I said, a strategy that fundamentalist always use alongside the simplification of reality.
> You call anecdotal, what is just an example. You are confusing an additional reason for the lack of progress with an exuse for the first reason, which it was clearly not. I know Withakers work, I know Breggins. How the hell are you going to convince people of the need for change if you start screaming at everyone that does not share your mantra? Luckily Whitaker and Breggin don't behave like that, because it is obviously not going to amound to anything. In this way you are the one that is suffocating concerns.


RamonX, could you state specifically what part of your previous post I "turned around"?

"*If you start screaming at everyone that does not share your*"

 I thought I was typing? My bad. And if you ask me, Breggin is a little aggressive. Whitaker- maybe not. But Whitaker doesn't protest beyond the content of his academic work. Breggin often compares and openly ties psychiatry to Nazi ideology and aggressively protests against it. He has physically approached clinicians and asked them how they are not ashamed of themselves. And actually, his method has amounted to a lot. Perhaps you're not as aware of this work as you'd thought?

Example.





Listen, on one level, I know I'm being a bit harsh. But on another, I am so disgusted with the when I hear stuff like "NAMI is a wonderful organization", I sort of lose it. Oh well. Suck it up everyone. If you're going to say stuff like that expect some criticism from ex psych-patients/consumers. My stance that psychiatry is deeply corrupt is not a simplification for reality in my opinion. Your attempts to look objective by "walking the middle road" is simplification of reality.


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## gill (Jul 1, 2010)

/sigh, f'ing sigh, you don't need a damn study to tell what a drug does to you, just take the damn thing. . christ.


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## zach91 (Nov 21, 2011)

PhoenixDown said:


> Hey,
> 
> I want to start a cure DP campaign. I don't care how small it is, it may lead to something important in the long run.. or at least provide the function of raising a little more awareness. I know University Girl has pushed for this type of action in some of her youtube videos. There could be so much more in terms of awareness, support and resources.
> 
> ...


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## zach91 (Nov 21, 2011)

we need to let more and more no about DP we need to get it a the news world wide in newspapers, magazines and make let moere doctors no, ive ben sufering with it for 2 years and its a horrible disorder


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## kanda (Feb 8, 2012)

Dreamer* said:


> Oops, I messed that up.
> 
> I have tried over the past decade really to see how this can get out. If I won the lottery I would immediately start a .org One really needs to establish a non profit and I have learned a lot from NAMI re: doing this, but it is a full time effort involving numerous individuals, some of whom MUST get paid.
> 
> ...


I thought about starting an organization to raise awareness of this issue once I recover fully as well. I also thought about starting a low-cost nature retreat in california for people with DPDR that would essentially be very cheap( I.e. not one of those other nature retreats that rip you off for money- I was thinking like 200 a week (or 10-15 a night) and its basically a lodge out in Northern cali where people can just take a week off and walk around nature, drink some tea and talk with other people there who have DPDR, or sleep the whole time or just do what they want in a very quiet, serene and non-scheduled and non-pressure environment. Total relaxation and they have the choice to be around people who understand or they can be alone. there would probably be lots of legal issues, but I would love to figure out a way to get some property and build a real dormitory type place with lots of places to roam and connect without pressure. Basically a week to do what you want in a scale of your ways. Is this something that people would be interested in?

Since I'm still battling DP and am about 70- percent or recovered, these are things I would personally like to be involved in or experience myself, and I think at some point it could pay for itself if the structure was set up right and I ever got that return to feeling of creating meaning in my life. Right now I can barely handle getting up in the morning and functioning normally.But for those of you who want to make a difference in spreading the info about DPDR, message me, cause I'd like to have some sort of grasp in the future if there are others who would work on a plan or something meaningful long term. I'd like to hope in the future if I can recover form this to do something meaningful and helpful


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## real50tyson (Feb 20, 2012)

That's sounds phenomenal...I'm from California.


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## real50tyson (Feb 20, 2012)

kanda said:


> I thought about starting an organization to raise awareness of this issue once I recover fully as well. I also thought about starting a low-cost nature retreat in california for people with DPDR that would essentially be very cheap( I.e. not one of those other nature retreats that rip you off for money- I was thinking like 200 a week (or 10-15 a night) and its basically a lodge out in Northern cali where people can just take a week off and walk around nature, drink some tea and talk with other people there who have DPDR, or sleep the whole time or just do what they want in a very quiet, serene and non-scheduled and non-pressure environment. Total relaxation and they have the choice to be around people who understand or they can be alone. there would probably be lots of legal issues, but I would love to figure out a way to get some property and build a real dormitory type place with lots of places to roam and connect without pressure. Basically a week to do what you want in a scale of your ways. Is this something that people would be interested in?
> 
> Since I'm still battling DP and am about 70- percent or recovered, these are things I would personally like to be involved in or experience myself, and I think at some point it could pay for itself if the structure was set up right and I ever got that return to feeling of creating meaning in my life. Right now I can barely handle getting up in the morning and functioning normally.But for those of you who want to make a difference in spreading the info about DPDR, message me, cause I'd like to have some sort of grasp in the future if there are others who would work on a plan or something meaningful long term. I'd like to hope in the future if I can recover form this to do something meaningful and helpful


I'm up for this


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