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Looking for help building website about DP/DR


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#13 tantebootsy

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Posted 11 March 2017 - 10:04 AM

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. ;)



#14 ThirdEye

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Posted 11 March 2017 - 10:09 AM

r @ depersonalization . org



#15 tantebootsy

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Posted 11 March 2017 - 10:16 AM

Alright, merci beaucoup! :)



#16 TDX

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Posted 11 March 2017 - 10:24 AM

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.



#17 wakemeupinside

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Posted 11 March 2017 - 11:26 AM

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.

#18 TDX

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Posted 11 March 2017 - 11:44 AM

 

 

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.



#19 tantebootsy

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Posted 11 March 2017 - 01:14 PM

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



#20 TDX

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Posted 11 March 2017 - 02:15 PM

 

 

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.



#21 tantebootsy

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Posted 11 March 2017 - 04:17 PM

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.
 

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.

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.

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)..

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.

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?

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.

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

#22 TDX

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Posted 13 March 2017 - 05:31 PM

 

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:
 
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."
 
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:
 
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:

 

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:
 
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:
 
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.


#23 Amina_x

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Posted 25 March 2017 - 10:58 PM

Keep at it!






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