# Looking for help building website about DP/DR



## tantebootsy

Hi,

my name is Michael from Germany and I'd like to build an informative, well usable website about DP/DR. I've already contacted the guys from depersonalisation.org but he/she/they never answered my offer to help updating their site. Additionally it seems like their site got hacked a few weeks ago ...

A few minutes ago I wrote an email to the guys from Depersonalization.info offering my help and waiting for their feedback. As their website seems to be pretty much outdated I guess they're interested in some help.

Working for about 5 years within the web-IT-business I've some knowledge in building websites and as a sufferer of DP for over 20 years I know how important it is to inform sufferers about this condition.

As working with others is often more fun and as I want to reduce my time sitting in front of the pc (as it intensifies my DP) I'd like to ask you boyz and girlz out there for some help, if you're interested and have some free time left.  I can imagine help regarding programming/technical stuff, writing texts, bringing up ideas, giving feedback to fundraising or whatever comes to your mind.

Talking about time: I guess you and me, we have a lot of ideas regarding the content and functionality of the site but as everything takes its time I don't expect it to evolve quickly. For me that's okay - I hope it's okay for you, too 

Ah, and If you know any other info-site about DP please let me know. I usually think it makes sense to join forces whererever possible ...

Cheers,

Michael


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## Surfer Rosa

I don't have any web design or psychology background, but I'll be following this thread. Stealing traffic from the scam websites, something the dated info sites fail to do, would be excellent.


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## vanuti vetru

This is a good idea but i was thinking... why not make this new site a part of dpselfhelp.com? Articles could be added as static pages or as "locked" topics to in a dedicated section. Alternatively a wiki-type script could be used. The idea would be to have a fixed knowledge base of sorts, a place where newcomers could find answers to their common questions. I often see new members here who describe typical DP symptoms and don't get many responses because hardly anyone is willing to reiterate what has been said so many times before (what's understandable).


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## mana_war

Sadly I have no tech skills of knowledge, but If you have instructions I am a fast learner, would like to be of help any way you would see fit for me.


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## handshaker

tantebootsy said:


> Hi,
> 
> my name is Michael from Germany and I'd like to build an informative, well usable website about DP/DR. I've already contacted the guys from depersonalisation.org but he/she/they never answered my offer to help updating their site. Additionally it seems like their site got hacked a few weeks ago ...
> 
> A few minutes ago I wrote an email to the guys from Depersonalization.info offering my help and waiting for their feedback. As their website seems to be pretty much outdated I guess they're interested in some help.
> 
> Working for about 5 years within the web-IT-business I've some knowledge in building websites and as a sufferer of DP for over 20 years I know how important it is to inform sufferers about this condition.
> 
> As working with others is often more fun and as I want to reduce my time sitting in front of the pc (as it intensifies my DP) I'd like to ask you boyz and girlz out there for some help, if you're interested and have some free time left.  I can imagine help regarding programming/technical stuff, writing texts, bringing up ideas, giving feedback to fundraising or whatever comes to your mind.
> 
> Talking about time: I guess you and me, we have a lot of ideas regarding the content and functionality of the site but as everything takes its time I don't expect it to evolve quickly. For me that's okay - I hope it's okay for you, too
> 
> Ah, and If you know any other info-site about DP please let me know. I usually think it makes sense to join forces whererever possible ...
> 
> Cheers,
> 
> Michael


Hi,

I think this is a great idea. I can help you with aspects of the website and promotion.

Have you thought about creating a very well edited promo video to draw attention to the issue, then maybe post a kickstarter thread, to see if people will help fund for a good cause....


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## something6789

tantebootsy said:


> Hi,
> 
> my name is Michael from Germany and I'd like to build an informative, well usable website about DP/DR. I've already contacted the guys from depersonalisation.org but he/she/they never answered my offer to help updating their site. Additionally it seems like their site got hacked a few weeks ago ...
> 
> A few minutes ago I wrote an email to the guys from Depersonalization.info offering my help and waiting for their feedback. As their website seems to be pretty much outdated I guess they're interested in some help.
> 
> Working for about 5 years within the web-IT-business I've some knowledge in building websites and as a sufferer of DP for over 20 years I know how important it is to inform sufferers about this condition.
> 
> As working with others is often more fun and as I want to reduce my time sitting in front of the pc (as it intensifies my DP) I'd like to ask you boyz and girlz out there for some help, if you're interested and have some free time left.  I can imagine help regarding programming/technical stuff, writing texts, bringing up ideas, giving feedback to fundraising or whatever comes to your mind.
> 
> Talking about time: I guess you and me, we have a lot of ideas regarding the content and functionality of the site but as everything takes its time I don't expect it to evolve quickly. For me that's okay - I hope it's okay for you, too
> 
> Ah, and If you know any other info-site about DP please let me know. I usually think it makes sense to join forces whererever possible ...
> 
> Cheers,
> 
> Michael


I've done some really really simple stuff with web dev. By no means can I do programming or design a web page from the ground up. But I was in charge of updating AP and payroll webpages at my old job and I did some web design stuff at an internship I had. I'm genuinely curious to see how the process works again, as I intend to create a food blog one of these days and want to get my feet wet somewhere. Maybe I can help you and you can help me?

Ps. if you're not interested in generating ad revenue from visits you can get free hosting and a stylish widget type site in exchange for generating the ad revenue for someone else, or so I've heard. Also my experience was on a paid for word-press site updating pages and adding on new pages for various product offerings the company had and its not super difficult from what I remember.


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## tantebootsy

Hello everyone,

I'm happy to see some reactions regarding my idea ? thanks for all your feedback!  I'll answer to everyone in detail, so that nothing gets lost:



Surfer Rosa said:


> I don't have any web design or psychology background, but I'll be following this thread. Stealing traffic from the scam websites, something the dated info sites fail to do, would be excellent.


I'm currently only aware of _one_ info site: depersonallization.info. Do you know anymore? If yes please tell me/us because I'd like to contact the publisher as I think networking is always important ? especially regarding a subject, where there's not many people writing about it.



vanuti vetru said:


> This is a good idea but i was thinking... why not make this new site a part of dpselfhelp.com? Articles could be added as static pages or as "locked" topics to in a dedicated section. Alternatively a wiki-type script could be used. The idea would be to have a fixed knowledge base of sorts, a place where newcomers could find answers to their common questions. I often see new members here who describe typical DP symptoms and don't get many responses because hardly anyone is willing to reiterate what has been said so many times before (what's understandable).


I don't want to use this forum as an alternative to a well structured website which potentially can have more features like newsletters, online-tools, news etc. A wiki-based solution is generally a good idea I think but from my experience wikis sometimes get chaotic and also the navigation and content management is often not very userfriendly. So for a first shot I'd like to stick to the CMS-solution ? we'll see how this works and maybe change the system if we see there are better alternatives.



mana_war said:


> Sadly I have no tech skills of knowledge, but If you have instructions I am a fast learner, would like to be of help any way you would see fit for me.


Thanks for your offer!  I guess the most time will be consumed not by the technical stuff but by creating the texts. Could you image yourself as editor or what would you like to do? What is your passion? 



handshaker said:


> Hi,
> 
> I think this is a great idea. I can help you with aspects of the website and promotion.
> 
> Have you thought about creating a very well edited promo video to draw attention to the issue, then maybe post a kickstarter thread, to see if people will help fund for a good cause....


Yes I thought about kickstarting, but all this promo-stuff is currently not my scene  So if you would like to take over that part feel welcome!  Regarding a short info-film I have the idea to ask some film schools here in Germany if they might be interested make a film about DP as one of their projects. Don't know if it's realistic but it's worth asking I think. And regarding money I want to ask some health insurances and maybe government institutions if it's possible to fund some money for our work.



something6789 said:


> I've done some really really simple stuff with web dev. By no means can I do programming or design a web page from the ground up. But I was in charge of updating AP and payroll webpages at my old job and I did some web design stuff at an internship I had. I'm genuinely curious to see how the process works again, as I intend to create a food blog one of these days and want to get my feet wet somewhere. Maybe I can help you and you can help me?
> 
> Ps. if you're not interested in generating ad revenue from visits you can get free hosting and a stylish widget type site in exchange for generating the ad revenue for someone else, or so I've heard. Also my experience was on a paid for word-press site updating pages and adding on new pages for various product offerings the company had and its not super difficult from what I remember.


Thanks for your offer but I don't want to go for work-exchange here, as I want to limit my work in front of the pc only to the webpage itself, not to other sideprojects as PC-work intensivies my DP. I hope you can understand that. And btw: if you support the website-progress you wouldn't help _me_ but "the community" as I see it  Thanks for your input, maybe you're going to help me/us despite the fact that you're not getting anything back (yet) ...? 

I don't want to have ads on the site as the users shall feel that they're on a trustworthy page. I resell webspace on my own / we have our own server, so hosting's not a problem.

Ok, I'm done for now ? within the next days I'll give you guys an update about what has been done within the last weeks.

Cheers,

Michael


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## Guest

i don't have a web background, as for DP and psychology i do, i would be happy to help you and offer something.


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## tantebootsy

Hello everyone,

long time no see 

In the meanwhile I contacted Jeff Abugel from depersonallization.info to ask him if he was interested in working together regarding a new website for DP/DR. He says he can support us regarding networking because as he already (co)authered some books on DP/DR he has contacts to researchers etc.

I then created a sitemap for our new website which you can find here (you can understand this sitemap as a "dream"-version of the website in the far future. I'd propose to start off with a reduced version with much less content first).

http://depersonalization-derealization.info/depersonalization.info-Sitemap-V1.0.pdf

At last a few weeks ago I managed to create a wiki on the topic We can gather the content in the wiki and then move it to the website as soon as we think it's enough information. Of course we will be able to add more content to the existing site after the going live. You can find the wiki here:

http://wiki.depersonalization-derealization.info/

Please register to be able to add content. If you have comments please add them with background-color on the text as I did. Until now I didn't find a better solution for comments yet, but I'm on it. If you dare you can add your real name to the comment but of course you're not forced to.  It simply makes it easier to discuss things if you know who wrote the comment.

Nothing I've done so far is "fixed and finished" - it's just a start from my point of view. So if you would like to discuss things, have additional ideas, proposals etc. let's use this thread for it. Maybe we'll move to another software to discuss things but for now I think this forum's enough.

Looking forward to hear from you!

Cheers,

Michael


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## TDX

Your idea is good, but I'm not sure yet if I will contribute, because Elliott and I are more or less working on a wiki ourselfs, for which I already have built some content. The concept of it is more to build a book about depersonalization disorder. Concerning the content it is intended to be academic and very critical, particulary when it comes to mischiefs (this especially relates to Michal).

Unfortunately I made the experience that many people are not really willing or able to work on this level, but in my opinion it's the only way such a project should be done, if the intention is to improve the situation.


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## tantebootsy

I contacted Elliott some time ago. He told me you were thinking about a wiki but didn't create one yet. So let's join forces here and work together I'd say, no?

M*


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## ThirdEye

Elliot is working on something, very impressive.


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## tantebootsy

Ok it sounds like you know more than me as he didn't answer my last PMs anymore. If I can be of help I would like to get in touch with you guys - how and where do you communicate? Of course I don't want to waste my time by creating something some other group's already developing.


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## ThirdEye

r @ depersonalization . org


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## tantebootsy

Alright, merci beaucoup!


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## TDX

Elliott didn't tell me about depersonalization.org yet. But if he sets the wiki up, I think I will continue working there. Have to talk with him about this (wrote him a PM).



> Ok it sounds like you know more than me as he didn't answer my last PMs anymore. If I can be of help I would like to get in touch with you guys - how and where do you communicate? Of course I don't want to waste my time by creating something some other group's already developing.


Unfortunately he is quite slow at answering PMs since some time ago. I agree that it is best to work together on a single project.


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## dissociative12

An idea might be to have a page with peoples stories and then visitors can really get a feel for what dpd is like. Happy to share my story.


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## TDX

> An idea might be to have a page with peoples stories and then visitors can really get a feel for what dpd is like. Happy to share my story.


I intended the wiki also to include personal stories, so your wish would be granted. Generally one intention of the wiki would be to convey not only what Depersonalization Disorder is like, but also that it is a horrible disorder.


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## tantebootsy

My intention for the website was to give especially newbies some guidance what they're dealing with and what tools (therapies, practices like meditation / positive psychology etc., medication) are out there which might be helpful. Only because for some of us this disorder got chronic doesn't necessarily mean that it always have to be like that if the correct treatment is given in the beginning already - at least this is what I hope for all the new sufferers out there. Even me, who's suffering from it for over 20 years by today could make some progress with it - I feel much more real and intense than I did a few years ago. I think it's important for sufferers to not give up and to not stop trying to get out of this condition and this is what I had in mind as "message" from the website: don't give up hope!

I also think it is important to have a research/science-section but as studies and medical papers are hard to understand for laymen - including me  - I think it would be good to have some kind of translating abstract for each paper you have on the website.

I also would like to have kind of an "Ask the expert"-section as Jeff Abugel has it - but I would like to include answers from different researchers/therapists, not only from one person. Because I think I'm not the only one recognizing that the few researchers and therapists out there talk pretty differently about DP/DR - some say "forget it, there's no cure" (Neziroglu), some claim the contrary (Michal). 

@TDX: Why do you think Michal is kind of an idiot? And what exactly do you mean by "the website shall be critical"?

@wakemeupinside: If you don't know it already Jeff Abugel has a stories section on his website aswell. He told me as soon as he gets his website-software back on running he wants to continue with this section if I remember correctly.

Cheers,

Michael


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## TDX

> And what exactly do you mean by "the website shall be critical"?


Unfortunately in the medical community many professionals do not really have the intention to help people who suffer greatly, but want to make money or fullfil themselves at other people's expense. Even in research there is much crap. My intention would not only be to tell the reader what it is in the literature, but also to critically evaluate it and point out possible fallacies and snake oil.

For example you claim that Michal says that Depersonalization Disorder is curable. The wiki should not leave it at giving him a stage, but also investigate how much is behind his claim.



> Why do you think Michal is kind of an idiot?


To make it short, here the main reasons:

-He downplays Depersonalization Disorder in his book and towards the public.

-He pretends that the pseudoscientific psychoanalysis can explain Depersonalization Disorder.

-He claims that it can be cured by (psychodynamic) longterm psychotherapy without having evidence for it.

-He made guidelines which effectively outlaw drug treatment for Depersonalization Disorder, although there is more evidence for the efficacy of certain drugs against Depersonalization Disorder than for psychotherapy (where is almost no evidence).

In my opinion he is comparable to Simon Wessely, who is one of the leading psychosomatics who claimed that Chronic Fatigue Syndrome is psychosomatic. I think Michal has quite similar intentions.



> My intention for the website was to give especially newbies some guidance what they're dealing with and what tools (therapies, practices like meditation / positive psychology etc., medication) are out there which might be helpful. Only because for some of us this disorder got chronic doesn't necessarily mean that it always have to be like that if the correct treatment is given in the beginning already - at least this is what I hope for all the new sufferers out there. Even me, who's suffering from it for over 20 years by today could make some progress with it - I feel much more real and intense than I did a few years ago. I think it's important for sufferers to not give up and to not stop trying to get out of this condition and this is what I had in mind as "message" from the website: don't give up hope!


Giving the information you reffere to is my goal, too. However my opinion on the last matter is the contrary: There is no scientifically supported treatment for Depersonalization Disorder. Apparently some recover, but many and most likely most sufferers will have the disorder for the rest of their life. Some of them may be lucky and respond to drugs, but many will be resistant to treatment. There is almost no research about Depersonalization Disorder and also nothing to suggest that this might change in the near future. This means that for many there is no reason for hope.

For many people with Depersonalization Disorder there is simply nothing they can do to change their fate. In my opinion it is absolutely detrimental to convey a message of hope when there is no reason for it. The reasons are several: First it is a lie and in my opinion sick people should be told the truth about their illness. Or would you tell cancer patients whose days are counted that there is hope and they can do something to prevent their death? People with mental illnesses shouldn't be discriminated against in this regard. Second it leads to the sufferers looking for the mistake in themselves, as if it was their own fault that they are still ill. But in Depersonalization Disorder the problem is externally caused: By the ignorance of the medical community and the resulting lack of interest in finding treatments. Sufferers have to realize this is something they must fight against. Third it can prolong suffering, by fooling people into believing that there is a way out, although there is none. This may be controversial, but since I'm mentally ill I am a proponent of assisted suicide. People with severe and unbearable illnesses should be provided with a safe way out and not be put off with dubious arguments.


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## tantebootsy

TDX said:


> Unfortunately in the medical community many professionals do not really have the intention to help people who suffer greatly, but want to make money or fullfil themselves at other people's expense. Even in research there is much crap. My intention would not only be to tell the reader what it is in the literature, but also to critically evaluate it and point out possible fallacies and snake oil.


Hm, I guess you have pretty different experiences with professionals than I had - there were some pretty strange creatures among them, yes  but also a lot who I felt being engaged with the therapy. I'm interested to see what you think is crap regarding the research.



TDX said:


> For example you claim that Michal says that Depersonalization Disorder is curable. The wiki should not leave it at giving him a stage, but also investigate how much is behind his claim.


Yes, I'm also interested regarding his numbers of successfully healed DP-sufferers  This could be part of an interview where we could face the different researchers with the different claims they make. I'm already in contact with him. He's willing to support us regarding the website and I hope he's also open for critical questions.



TDX said:


> To make it short, here the main reasons:
> 
> -He downplays Depersonalization Disorder in his book and towards the public.
> -He pretends that the pseudoscientific psychoanalysis can explain Depersonalization Disorder.
> -He claims that it can be cured by (psychodynamic) longterm psychotherapy without having evidence for it.
> -He made guidelines which effectively outlaw drug treatment for Depersonalization Disorder, although there is more evidence for the efficacy of certain drugs against Depersonalization Disorder than for psychotherapy (where is almost no evidence).
> 
> In my opinion he is comparable to Simon Wessely, who is one of the leading psychosomatics who claimed that Chronic Fatigue Syndrome is psychosomatic. I think Michal has quite similar intentions.


Again your perception is pretty different than mine. But we can face him with your critism and see what he'll answer.



TDX said:


> Giving the information you reffere to is my goal, too. However my opinion on the last matter is the contrary: There is no scientifically supported treatment for Depersonalization Disorder.
> 
> Apparently some recover, but many and most likely most sufferers will have the disorder for the rest of their life. Some of them may be lucky and respond to drugs, but many will be resistant to treatment.


Yes, you can read it anywhere, that there is no scientifically supported treatment but that doesn't necessarily means that there is no cure. So what you criticise regarding Michal's claim is valid for the opposite aswell: if I know correctly there's no study which is statistically significant which has investigated over a long period of time how many sufferers of DP/DR still have their symptoms after let's say 20 years. I don't say that it is curable in any case I simply say we don't know - so none of the claims makes sense to me as long as nobody knows. And if nobody knows for sure how can anybody say what is fact and what will be in the future? So regarding the website I'd like to be open and cricital for both sides but give people tools at hand which might help them to feel better in any way and not simply smash it in their face like "you're fucked"  Every person and every experience is different and I cannot know if he/she has the chance to get out of this condition. But if there's a slight chance to help people (and if it's "only" tools to better cope with the symptoms) I think we should offer it while at the same time saying "there's no official treatment yet and yes, it can be, that this experience lasts for your whole life" (which is true for depression and any other psychological disorder, btw)..



TDX said:


> There is almost no research about Depersonalization Disorder and also nothing to suggest that this might change in the near future. This means that for many there is no reason for hope.


Simply because there's no solution now doesn't mean that there won't be a solution in the future. Regarding neurological research via fMRT for example there is a lot more progress in understanding the brain than there was in the past. We've come a long way from Freud's crazy sexual phantasies ... uhm interpretations!  So maybe some day we'll get rid of DP/DR simply by doing Neurofeedback. Or they will accidently find a medical treatment etc. We don't know and for me this is reason enough to not give up hope for now.



TDX said:


> For many people with Depersonalization Disorder there is simply nothing they can do to change their fate. In my opinion it is absolutely detrimental to convey a message of hope when there is no reason for it. The reasons are several: First it is a lie


Why is it a lie to tell people that there is no proven treatment but that there's option 1,2,3 ... they can try out?



TDX said:


> and in my opinion sick people should be told the truth about their illness. Or would you tell cancer patients whose days are counted that there is hope and they can do something to prevent their death?


Again this is true for the other way around as well: I know so many stories, where doctors told their patients that they won't live next year but then "life appeared" and the patient is still alive or maybe just a few years longer than the doctor said. You don't know every user visiting the website so you cannot tell if he/she will "make it" or not.



TDX said:


> People with mental illnesses shouldn't be discriminated against in this regard. Second it leads to the sufferers looking for the mistake in themselves, as if it was their own fault that they are still ill. But in Depersonalization Disorder the problem is externally caused: By the ignorance of the medical community and the resulting lack of interest in finding treatments. Sufferers have to realize this is somehow fight against this. Third it can prolong suffering, by fooling people into believing that there is a way out, although there is none. This may be controversial, but since I'm mentally ill I am a proponent of assisted suicide. People with severe and unbearable illnesses should be provided with a safe way out and not be put off with dubious arguments.


Yes, the lack of research is pretty sad. So besides the website we should investigate in how to point more researchers to this disorder. For this I think it makes sense to talk to the existing researchers first to find out if we as sufferers can be more "loud" in some way.

Cheers,
Michael


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## TDX

> Hm, I guess you have pretty different experiences with professionals than I had - there were some pretty strange creatures among them, yes


I am not so much referring to ordinary therapists, but to scientists. I think I can say that I have some insight about things going wrong. This does not only come from depersonalization, but also some other diseases that I have, especially one that probably has one of the highest proportions of scammers in medicine. I can only advise you to always have a sceptical attitude about what you read, especially in psychiatry.



> Again your perception is pretty different than mine. But we can face him with your critism and see what he'll answer.


I know Michal's book, his publications, his interviews and his behavior towards sufferers, that is documented in the german forum. He is the typical psychosomatic. He does not want to find a cure for severly suffering people. His goal is to do the same that his peers were doing in the past to people who had the "holy seven" and are doing today to people who have fibromyalgia, chronic fatigue syndrome, psychogenic seizures and other so-called "somatoform disorders". They are scammers who want to fulfill themselves on the back of innocent people by denying treatments that actually work or delay the developement of such treatments for diseases, that are currently poorly understood. They are potraying people, who are suffering from real diseases, as yuppies whose problems are all in their head and entirely their own fault and who can be cured by psychotherapy, although this isn't the case.

Inform yourself about the situation in chronic fatigue syndrome on some websites made by sufferers and you will see that I am right. Michal belongs to this discipline and his writings strongly suggest that he is in no way different than his colleagues. Experience from chronic fatigue syndrome has shown that talking to such people does not work. They are ruthless and don't have a sense of guilt. All they think about is their career and their ideology. It is much better to talk *about* people like him and not *with* them. At least that's the approach I prefer. Much like bullies at school they are not open to reason and will never stop, unless patients fight back. And a look at the CFS-scene shows that patients increasingly do so, which in my opinion should happen in a larger more organized scale. Right at the moment Depersonalization Disorder is for many, more or less, a blank sheet. Patients with Depersonalization Disorder should not allow people like Michal to recreate conditions like in the "somatoform disorders".



> Yes, I'm also interested regarding his numbers of successfully healed DP-sufferers


The treatment concept he outlines in his book does not make much sense. It does not go much beyond the usual content-free jabbering about underlying conflicts anyway. Furthermore he says in several sources that (psychodynamic) longterm psychotherapy over several years was required for a remission. This can be interpreted as an admission that short-term treatments, like at his clinic, don't do the job. But longterm psychotherapy, particulary if psychodynamic, is unlikely to do it either. It's efficacy is questionable, which is especially clear since Leichsenring repeatedly tried to outwit the scientific community with his faulty metanalyses. Michal does not give a convincing argument why it should still suddenly work against Depersonalization Disorder, a severe mental disorder that even by many psychoanalysts was deemed incurable.

However in the literature and in his book he shortly presents a few patients he claims that have been treated successfully at his clinic. The most important is probably this one:
http://www.schattauer.de/magazine/uebersicht/zeitschriften-a-z/nervenheilkunde/inhalt/archiv/issue/1612/manuscript/19073.html

But you should not interpret too much into that. Even if he shows you a couple of people who recovered during their stay at his clinic, this doesn't tell much of anything, because several factors might confound the results. For example it would be necessary to know how many patients underwent treatment at his clinic *without* success. Another problem is that spontaneous recoveries seem to happen occasionally. In such a case the recovery would be erroneously attributed to the treatment. Also selection might be an issue, because Michal seems to reject some patients:

"hatte vorgestern bei Dr Michal angerufen und gefragt wie es aussieht ob ich doch noch eine Therapie dort machen kann.Er nimmt mich aber nicht auf.bin ziemlich enttäuscht von ihm. [...] so ungefähr ich hätte nicht genug Eigenmotivation da ich mich 2 Jahre nicht gemeldet habe. Was aber daran lag das ichs mir einfach nicht zu getraut habe. [...] ja sein verhalten fande ich auch ziemlich unpassend und kalt zu mal als ich damals zum Gespräch dort bei ihm war da war er total sympatisch.erklären kann ichs mir auch nicht aber muss ich wohl nun mit klar kommen."
Source: http://www.depri.ch/f9/umfrage-depersonalisation-46405/index181.html

This user suffers from severe depersonalization together with severe depression. He is clearly one of the very severe cases and during reading his posts I did not have the impression that he has a low motivation for treatment. This is particulary absurd if one considers that he stated to have been on 20+ clinics. But it might show that Michal rejects patients for dubious reasons and this is probably the case for the more difficult ones. Even the case report mentioned above is questionable, because the patient was arguably not one of the severe cases (for example no emotional numbness reported) and it seemed like the components he borrowed from the cognitive-behavioral approach of Hunter et al did the job and not the psychodynamic vodoo.

There are many more pitfalls when it comes to assessing the efficacy of treatments. It would certainly be a good idea for you to inform yourself about them.

I don't want to gurantee that there really is nothing behind Michal's ideas. Maybe some people can benefit from his psychotherapy. But the lack of a sound treatment concept and lack of empirical evidence speak against this. But apparently this did not stop him proclaiming psychotherapy as the treatment of choice for Depersonalization Disorder.



> This could be part of an interview where we could face the different researchers with the different claims they make. I'm already in contact with him. He's willing to support us regarding the website and I hope he's also open for critical questions.


It's good for patients to organize themselves. But I'm very reserved when it comes to professional involment. Remember the other pysical disease I have? In Germany there is a patient organization that had the support of several professionals from the start. The consequence was that this organization was always used by them as a tool to foster their own interests in the name of the patients. In my opinion it is a good idea to make something for advocacy, but turning to the wrong people and giving them power can be very harmful.

I don't know what Elliott's opinion is on this matter, but I would want depersonalization.org and the wiki to be as independent from at least established professionals like Michal, Simeon, Sierra and the dissociation community as possible.

But your approach could still have merit, because it will generate more content that we could talk about. The german forum tried something like you think about for a short time. For example they interviewed Michal and Bohus many years ago:
https://web.archive.org/web/20091027053356/http://de.geocities.com/infodp/heft2/fragen.html
http://www.dp.yourweb.de/depersonalisationforum/viewtopic.php?f=102&t=1183&p=14983

The value of the interviews is limited in terms of knowledge about depersonalization. I don't agree to many of their answers, but they are still interesting, because although they do not give much insight concerning depersonalization, they show a bit how Bohus and Michal think.

Perhaps it might be a good idea for you to ask at the german forum if they want to contribute to your website:
http://www.dp.yourweb.de/depersonalisationforum/index.php



> Simply because there's no solution now doesn't mean that there won't be a solution in the future. Regarding neurological research via fMRT for example there is a lot more progress in understanding the brain than there was in the past. We've come a long way from Freud's crazy sexual phantasies ... uhm interpretations!


While it might be true for other areas in medicine that there is a steady advancement, this is unfortunately not the case in psychiatry, or at least not regarding treatment. If you bother to inform yourself about the history of psychiatry you will see that almost all groundbreaking treatments were found by accident. This includes for example:

-Electroconvulsive therapy, because they observed that seizures improved mood in some people.
-The first antipsychotic, which was regarded as a sedative at first.
-The monoamine oxidase inhibitors. The first one was used to treat tuberculosis.

The last real game-changing advancement in the treatment of mental disorders was the introduction of the first atypcial antipsychotic Clozapine. This was more than 40 years ago. Afterwards there did not come much that really changed the situation. Indeed, there were several new psychiatric drugs, but most had mechanisms of actions similar to preceeding ones and only differed in side-effects for selected patients. Of course this wasn't useless, because this allowed to optimize the tolerability of drug treatments, but it did not markedly increase the effectiveness. In all mental disorders a substantial proportion of patients is resistant to all established treatments and so new innovative treatments are urgently needed.

Unfortunately even this flow of drugs with limited usefulness has stopped for the most part. It's known that the pipeline for psychiatric drugs has run dry. Most pharma companies abandoned psychiatry. You can see this in the following list that contains all new FDA-approved drugs for each year:
https://www.centerwatch.com/drug-information/fda-approved-drugs/therapeutic-area/17/psychiatry-psychology

However there are some interesting drugs on the horizon that might come in the following years, that might not only be groundbreaking for depression, but with some luck also for Depersonalization Disorder, namely ALKS-5461 and perhaps Rapastinel. Unfortunately both of them are based on serendipitous discoveries as well. ALKS-5461 is an opioid modulator based on buprenorphine. It was known for years that treatment-resistant depression may respond to opioids. In fact before the 1950s depression was sometimes treated using opioids, so the knowledge that opioid modulators may help for depression is very old. Rapastinel is based on the observation that the party drug Ketamine works in some patients with treatment-resistant depression. Overall there might be a small "island of innovation" during the next few years, but afterwards there probably won't be really new psychiatric drugs for the next decades.

Concerning fMRIs and the like you should be aware that currently there is no established treatment that was found with the help of fMRIs. There is some experimental stuff, so perhaps this changes in the future, but it is uncertain if these treatments will ever arrive at the patients. While it is true that functional neuroimaging is a very useful tool to research brain function, many people do the mistake of overrating it.



> So maybe some day we'll get rid of DP/DR simply by doing Neurofeedback.


Biofeedback was researched one time for Depersonalization Disorder, however without success:
http://www.tandfonline.com/doi/abs/10.1080/15299732.2011.606742

As far as I know Biofeedback exists since more than 30 year, but still only carves out a niche existence. Neurofeedback is not much better.



> We've come a long way from Freud's crazy sexual phantasies ... uhm interpretations!


But less than many people think. For example did you read the psychoanalytical papers Michal cites in his book on page 57 (first edition)? For example Jacobson says in her paper (p. 592):

"Mrs. A., a young mother suffering from an anxiety hysteria, has a charming little daugther of five to whom she is attached by very close narcissistic ties. She has transferred to the child fantasies originating in her relationship to her powerful mother. In fact her imagination has equipped the little girl with an illusory penis and even transformed her into a penis belonging to herself;"



> Or they will accidently find a medical treatment etc. We don't know and for me this is reason enough to not give up hope for now.


It might be possible that there are already some drugs on the market that might help in some people for Depersonalization Disorder, but haven't been identified yet. There are several that come to my mind. So it is possible that if research interest into Depersonalization Disorder increases, new treatments might be identified quickly. However, as these drugs are already on the market, they are already available to you if you find a psychiatrist who is willing to experiment. If you are done with them then there is not much room for hope.

You say "We don't know", but this is just not true. We know that the facts are not on our side: There is almost no research into Depersonalization Disorder. Even for disorders like depression and schizophrenia there were no significant improvements in treatments during the last decades despite much research effort. Generally the interest in developing new drugs for mental disorders is low. This is enough to say that chance are very low, at least if the current situation does not change.



> Yes, the lack of research is pretty sad. So besides the website we should investigate in how to point more researchers to this disorder. For this I think it makes sense to talk to the existing researchers first to find out if we as sufferers can be more "loud" in some way.


As I have pointed out above it also matters to avoid the wrong people.


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## Amina_x

Keep at it!


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## tantebootsy

TDX said:


> I know Michal's book, his publications, his interviews and his behavior towards sufferers, that is documented in the german forum. He is the typical psychosomatic. He does not want to find a cure for severly suffering people. His goal is to do the same that his peers were doing in the past to people who had the "holy seven" and are doing today to people who have fibromyalgia, chronic fatigue syndrome, psychogenic seizures and other so-called "somatoform disorders". They are scammers who want to fulfill themselves on the back of innocent people by denying treatments that actually work or delay the developement of such treatments for diseases, that are currently poorly understood.


I think it's quite usual and natural that not only in science there are often different theories and perspectives regarding phenomenons in nature. And I'm always careful in judging people I don't know by myself. I also try not to generalize regarding a group of people (being it different races, genders or scientists of a certain theory) because from my experience people are not always black or white. What I mean by that is: Of course you can critize his theories but combining it with accusations like "They are scammers who want to fulfill themselves on the back of innocent people by denying treatments" or "They are ruthless and don't have a sense of guilt. All they think about is their career and their ideology. Much like bullies at school they are not open to reason and will never stop" to me sounds pretty much overdrawn. It might be true that some scientists out there are only interested in themselves. But from my personal experience (I've been in his clinic) Michal is interested helping out. I think he's not the best therapist regarding interpersonally communcation - in fact I was so hurt by the first interview with him that I told him I would only come to his clinic when it's for sure that he will not be my therapist  and in the end it might be true that all people which thought DP/DR was a psychological rather than a physiological phenomenon are wrong. But hey, we're all only human beings with weaknesses, with our very own point of views and perceptions, we make mistakes and we believe a lot rather than knowing - and there's no exception for that for scientists and therapists.



TDX said:


> Inform yourself about the situation in chronic fatigue syndrome on some websites made by sufferers and you will see that I am right. Michal belongs to this discipline and his writings strongly suggest that he is in no way different than his colleagues. Experience from chronic fatigue syndrome has shown that talking to such people does not work.


You are comparing CFS with DP/DR here but which study says that therapy doesn't work at all regarding DP/DR? As I already told you I cannot confirm this. I'm still depersonalized, yes, but I can definitely say that the intensity of my numbness etc. is not as strong as it was 15 years ago. So from my experience I would say: I definitely have influence on my DP/DR but not yet as much as I would like to have. My hope still is that I'll be able to beat it some day.

On the other hand you might be right, of course - but which studies or experiments lead to your conclusion that therapies don't have an effect at all? I am really interested in your theory, so if you have some links for me I would appreciate it!



TDX said:


> The treatment concept he outlines in his book does not make much sense. It does not go much beyond the usual content-free jabbering about underlying conflicts anyway. Furthermore he says in several sources that (psychodynamic) longterm psychotherapy over several years was required for a remission.


Interesting - to me he always said he didn't want to discuss therapy under a certain label, he said "the important thing is what's happening in the therapy not the label of the therapy".



TDX said:


> But longterm psychotherapy, particulary if psychodynamic, is unlikely to do it either. It's efficacy is questionable, which is especially clear since Leichsenring repeatedly tried to outwit the scientific community with his faulty metanalyses. Michal does not give a convincing argument why it should still suddenly work against Depersonalization Disorder, a severe mental disorder that even by many psychoanalysts was deemed incurable.


Yes, from my experience aswell the psychodynamic group-approach they use in his clinic is shit and that's what I told the therapists. To me a CBT-approach would make much more sense I told them. But as it is often when you deal with humans: they have their own point of view, they have their studies claiming that what they do is cool and they belive in it. To me currently it seems like everybody can be right or wrong because nobody really knows in the DP/DR-world.


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## tantebootsy

TDX said:


> However in the literature and in his book he shortly presents a few patients he claims that have been treated successfully at his clinic. The most important is probably this one:
> http://www.schattauer.de/magazine/uebersicht/zeitschriften-a-z/nervenheilkunde/inhalt/archiv/issue/1612/manuscript/19073.html
> 
> But you should not interpret too much into that. Even if he shows you a couple of people who recovered during their stay at his clinic, this doesn't tell much of anything, because several factors might confound the results. For example it would be necessary to know how many patients underwent treatment at his clinic *without* success.


Yes, good point. And not only regarding Mainz - I would also be interested in London's success rate.



TDX said:


> Another problem is that spontaneous recoveries seem to happen occasionally. In such a case the recovery would be erroneously attributed to the treatment.


Yes, of course you have these variables regarding nearly all diseases - psychological aswell as physiological. Nature is simply to complex for us humans to understand completely.



TDX said:


> "hatte vorgestern bei Dr Michal angerufen und gefragt wie es aussieht ob ich doch noch eine Therapie dort machen kann.Er nimmt mich aber nicht auf.bin ziemlich enttäuscht von ihm. [...] so ungefähr ich hätte nicht genug Eigenmotivation da ich mich 2 Jahre nicht gemeldet habe. Was aber daran lag das ichs mir einfach nicht zu getraut habe. [...] ja sein verhalten fande ich auch ziemlich unpassend und kalt zu mal als ich damals zum Gespräch dort bei ihm war da war er total sympatisch.erklären kann ichs mir auch nicht aber muss ich wohl nun mit klar kommen."
> Source: http://www.depri.ch/f9/umfrage-depersonalisation-46405/index181.html


I cannot judge this situation as I've not been with the two. But as I already said, Michal sometimes seems not to be the nicest man on earth, yes 



TDX said:


> This user suffers from severe depersonalization together with severe depression. He is clearly one of the very severe cases and during reading his posts I did not have the impression that he has a low motivation for treatment. This is particulary absurd if one considers that he stated to have been on 20+ clinics. But it might show that Michal rejects patients for dubious reasons and this is probably the case for the more difficult ones.


I think you read too much into this situation. As I said I suffer from DP/DR for over 20 years, tried a lot of different therapies and nevertheless was accepted to come to his clinic.



TDX said:


> There are many more pitfalls when it comes to assessing the efficacy of treatments. It would certainly be a good idea for you to inform yourself about them.


Oh, did I really sound so naive and clueless in my last posts that I deserve this tip of yours?


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## tantebootsy

TDX said:


> It's good for patients to organize themselves. But I'm very reserved when it comes to professional involment. Remember the other pysical disease I have? In Germany there is a patient organization that had the support of several professionals from the start. The consequence was that this organization was always used by them as a tool to foster their own interests in the name of the patients. In my opinion it is a good idea to make something for advocacy, but turning to the wrong people and giving them power can be very harmful.


I've experienced the opposite: I had been working with the Depression Liga (http://www.depressionsliga.de/) for some time and by then they were happy to work with at least one professional which supported them a lot. I think it depends on the people you work with.



TDX said:


> I don't know what Elliott's opinion is on this matter, but I would want depersonalization.org and the wiki to be as independent from at least established professionals like Michal, Simeon, Sierra and the dissociation community as possible.


Yes, we can discuss this in detail in the future. Independency is important of course but for me it's not the same as isolation.



TDX said:


> But your approach could still have merit, because it will generate more content that we could talk about. The german forum tried something like you think about for a short time. For example they interviewed Michal and Bohus many years ago:
> https://web.archive.org/web/20091027053356/http://de.geocities.com/infodp/heft2/fragen.html
> http://www.dp.yourweb.de/depersonalisationforum/viewtopic.php?f=102&t=1183&p=14983
> 
> The value of the interviews is limited in terms of knowledge about depersonalization. I don't agree to many of their answers, but they are still interesting, because although they do not give much insight concerning depersonalization, they show a bit how Bohus and Michal think.


Yep.



TDX said:


> Perhaps it might be a good idea for you to ask at the german forum if they want to contribute to your website:
> http://www.dp.yourweb.de/depersonalisationforum/index.php


"My" website? I think I said it before: I don't think of this project as "my" project but "our" project and I still hope there will be a collaboration and only _one_ website. Btw. have you heard of Elliot in the meantime? The website http://depersonalization.org/ still is in the state as it was a few months ago, no? And another question: Do you want to continue to write like that in the Wiki: http://depersonalization.org/wiki/doku.php? To me this looks more like a private Blog rather than a Wiki, that's why I'm asking.



TDX said:


> While it might be true for other areas in medicine that there is a steady advancement, this is unfortunately not the case in psychiatry, or at least not regarding treatment. If you bother to inform yourself about the history of psychiatry you will see that almost all groundbreaking treatments were found by accident.


I'm not so much interested in psychiatry respectively medication regarding DP/DR. I tried a lot of them without success.



TDX said:


> Unfortunately even this flow of drugs with limited usefulness has stopped for the most part. It's known that the pipeline for psychiatric drugs has run dry. Most pharma companies abandoned psychiatry.


Yep, I've read about it.



TDX said:


> Concerning fMRIs and the like you should be aware that currently there is no established treatment that was found with the help of fMRIs. There is some experimental stuff, so perhaps this changes in the future, but it is uncertain if these treatments will ever arrive at the patients. While it is true that functional neuroimaging is a very useful tool to research brain function, many people do the mistake of overrating it.


fMRI was only an example regarding new techniques which might bring new insights and therapies people didn't think about in the past. E.g. Niels Bierbaumer says in this presentation that for a long time the psychological community said there's no cure for psychopaths - and he claims that he could teach them anxiety for example:

https://www.dasgehirn.info/entdecken/moral-und-schuld/niels-birbaumer-therapie-von-psychopathen-mit-neurofeedback-505

I currently try neurofeedback (not fMRI, just a fullhead-EEG) in Munich and since about 3 weeks it fells like I have more connection to reality, less anxiety, more relaxation and connection to myself aswell. As you already said this result is influenced by a lot of factors, of course, but if it remains and advances I definitely can say that for me NF was working as nothing else changed in my life. Well, we'll see, I'm excited ...

But as I said NF was only an example ... another example could be the experiments regarding rTMS (https://de.wikipedia.org/wiki/Depersonalisation#Transkranielle_Magnetstimulation) - if I remember correctly you referred to them in another post already.



TDX said:


> You say "We don't know", but this is just not true. We know that the facts are not on our side:


You're mixing up two things here: I don't say that the facts tell us we have a bright shining future to come - I simply say we cannot know the future, that's all. Or do you want to tell me you can look into the future?  To me it seems like you want to convince me that there will never ever be a cure for DP/DR although you have no evidence for this statement. No offense here, it simply feels like that to me.

Cheers,
Michael


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