Depersonalization Support Forum banner

1 - 7 of 7 Posts

·
Registered
Joined
·
710 Posts
Discussion Starter · #1 · (Edited by Moderator)
One I know, had yesterday been in contact with the French researcher behind the rTMS trial at the right angular gyrus. The trial should according to the design from 2015 be a placebo controlled with a 100.patients. Last year they hoped to be finish around sept 2020 but they are still open for patients living in France.

This is really depressing that a trial can take more than 6.years because they can not locate a 100.patients in the Paris area. Research into depersonalization was until recently done at two small units in London and New York that made some small examinations like brain scans and small trial,- clearly underfunded if one looks at the sizes of the patients used. Now, these are closed.

So, the only research there is are some small studies done in other european countries. This is not enough if there shall be some hope of a treatment.

The unawareness and that it is still highly undiagnosed seems to be the core problem in getting founding, recruiting patients for doing more research into this condition. Deeply concerning.
 

·
Registered
Joined
·
93 Posts
Can only French citizens be accepted to the trial? Are you aware of the means the researchers are using to recruit subjects?
 

·
Registered
Joined
·
710 Posts
Discussion Starter · #3 · (Edited by Moderator)
Yes, only French citizens can be a part of the trial with a referral though the French health service. This by itself can give these limitations. I live in Denmark and our health service is divided into 5.regions. If you have any health problems it is your region your are in that addresses your problems. There might be a specialist service in another region so your region have to refer you to this other service in a another region with the money too for the other region to treat you. Such a system is also in place in the UK. When the depersonalization research unit was active you could only get access to it though the national health service in the UK. If you lived in the same part of London as the research unit you could easy get a referral though your GP. But, if you lived in other parts of the UK your had to go though a very bureaucratic process because it was the region you where in that had to refer you to the other region with the money to, to look at you. It could take years to get a referral and some never got it. If you was under 18.years at your outset you could not get a referral as it was a a clinic for adults. I think there could be similar systems in place in other parts of Europe like France. It can be that it is easy to get into the trial if you live in that area of Paris with the trial but you have to go though a very bureaucratic process if you live in other parts of france.
 

·
Registered
Joined
·
93 Posts
If the French healthcare system is indeed similar to the British and Danish ones, as you described, it is understandably unfortunate and inevitably acts as an obstacle in the recruitment of patients in any kind of study, let alone in DP studies. In my eyes, all online DP communities should make an effort to promote the French study to reach those living in the Paris area who may benefit from participating in such a study.
 

·
Registered
Joined
·
8 Posts
Good afternoon. I agree with this approach. We need to band together and get something done. I had a session with a TMS doctor in Boulder, CO this morning. He had not heard about TMS for DPD. I told him about this group and how we awe trying to get more information on better ways to treat this condition. I have been on and off this site for years, and I think the answer lies in the brain scan area. If I see one more article that says antidepressants and lamitrogene is the answer, I'll scream. I have tried over 30 different drug cocktails in the past 30+ years, and none of them worked.

Please help me to continue this thread and let's get something done. There is the other great thread with Mayer Gross, but this seems to be the latest date.
 

·
Registered
Joined
·
710 Posts
Discussion Starter · #6 · (Edited by Moderator)
There is a French girl who have been a part of the trial and responded. She had depersonalization for 7.years. She wrote on a facebook group that the response rate is around 50% at angular gurus. Angular gyrus is a hub in the default mode network- not a central one. The trial started around 2015 and likely designed a year before. At that time only conventional rTMS was available with a stimulation dept of 1.cm. This rules out many locations particularly in the prefrontal cortex that is 1/3 of the brain and central for emotional regulation done by the brain. Many central areas coming up as active in depersonalization is simply to deep to intervene in with conventional rTMS. So, rTMS inventions have been limited of this stimulation dept of conventional rTMS. That is the case in states like depression, OCD, addiction and PTSD that is also among the candidates form intervention with brain stimulation.

I am more interested in a explorative trial that is open with the use of new rTMS to try these deeper locations. In a combination with brain scans you will be able to come up with central locations and networks. So, if some do not respond at one location you scan to understand why. Their emotional regulation and networks might differ to those who respond. You will get a picture about the condition and central location and networks with that approach.

A review from last year of brain scans done in depersonalization recommended such a trial with the combination of rTMS and fMRI scans to find central locations.
 

·
Registered
Joined
·
102 Posts
Good afternoon. I agree with this approach. We need to band together and get something done. I had a session with a TMS doctor in Boulder, CO this morning. He had not heard about TMS for DPD. I told him about this group and how we awe trying to get more information on better ways to treat this condition. I have been on and off this site for years, and I think the answer lies in the brain scan area. If I see one more article that says antidepressants and lamitrogene is the answer, I'll scream. I have tried over 30 different drug cocktails in the past 30+ years, and none of them worked.

Please help me to continue this thread and let's get something done. There is the other great thread with Mayer Gross, but this seems to be the latest date.
I've said before and have thought deeply about starting a fund, but there are actually already a lot of them. Unreal is probably the biggest right now, both in terms of traction and active management, but there are several other ones as well like the Initiative for Depersonalisation Studies group. No, what really needs to happen is for the medical and research communities to take DPDR seriously. There's clearly high demand for finding a formal treatment/cure for DP, the problem is that it is being portrayed in popular media as some sort of eerie and sinister condition which poses too many challenges and raises more questions than answers, but actually, in reality, past research has shown a clear way forward, and the utility in using fMRI technology and rTMS to better understand the neural underpinnings of DPDR has been clearly demonstrated. So what needs to happen is a fundamental transformation in the attitude of the research community towards DPDR as a mental disorder, and us patients need to facilitate this process as much as possible by a.) getting a formal diagnosis so as to increase the statistics and b.) to speak about the condition and remove any stigma around it-this is the only plausible route to find an efficacious treatment. Meanwhile, the funds will do what the funds can do, ie marketing and so forth.
 
1 - 7 of 7 Posts
Top