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Looking for help building website about DP/DR

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#25 tantebootsy



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Posted 26 May 2017 - 10:00 PM

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.

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

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.

"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/...5/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 ;)

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.

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? ;)

#26 tantebootsy



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Posted 26 May 2017 - 10:01 PM

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.

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.

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:

"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://depersonaliza.../wiki/doku.php? To me this looks more like a private Blog rather than a Wiki, that's why I'm asking.

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.

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.

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:


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...gnetstimulation) – if I remember correctly you referred to them in another post already.

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.


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