PSSD Genome Project [Megathread]

[Sadness]

Hi, I´m 37,femle, and have a bad PSSD. I took Citalopram 20 - 40 mg ( 8 weeks) at home because of a bad depression,then in hospital Valdoxan25-50mg and Prothipendyl 40-80mg (neuroleptic) and Tavor, this didn´t work so they switched to Duloxetin 30mg (still Valdoxan), Quetiapin(neuroleptic)50-200mg!, then Bupropion150mg, then switched to Venlaflaxin 37,5-70mg. I was in hospital for 8 weeks and nothing worked for me it was more worse than before..... i got off the medication without beeing cured... now I am 3 month without medication.
Now I have still bad Depression, anhadonia, noises on my ears, bad eyes, lost 14 kg weight, DPD, PSSD, ect....., the madication made me more ill than i was before!!! This is no life anymore....I need to be cured nothing is left......sorry for my english I`m german

Please answer me ghost what can I do????????

[Ghost]

Hi, I´m 37,femle, and have a bad PSSD. I took Citalopram 20 - 40 mg ( 8 weeks) at home because of a bad depression,then in hospital Valdoxan25-50mg and Prothipendyl 40-80mg (neuroleptic) and Tavor, this didn´t work so they switched to Duloxetin 30mg (still Valdoxan), Quetiapin(neuroleptic)50-200mg!, then Bupropion150mg, then switched to Venlaflaxin 37,5-70mg. I was in hospital for 8 weeks and nothing worked for me it was more worse than before..... i got off the medication without beeing cured... now I am 3 month without medication.
Now I have still bad Depression, anhadonia, noises on my ears, bad eyes, lost 14 kg weight, DPD, PSSD, ect....., the madication made me more ill than i was before!!! This is no life anymore....I need to be cured nothing is left......sorry for my english I`m german

Please answer me ghost what can I do????????

Hallo. Ich lerne deutsche. Ich habe "PM-ed" dich.

[Ghost]

I am a bit unsure of what to do.

I have been hiding most of my genome results to people who have not donated their data yet, but I just found an SNP that I am very excited about.

I wish that I wasn't in this situation. I have spent the past 3 hours researching this SNP and drafting a post on my site, but I don't know if I should post it publically (which was my intention).

If people know that I might have found something important, will they FINALLY join the project to find out what it is? We've had 150 members active here in the past month. How do I only have 20 genomes?

I hate to treat fellow suffers as my enemies, but I am still curious why more people haven't donated their data. If releasing my findings didn't impact my confidence in getting more data, I would release it. However, I NEED more genomes to even confirm that these types of coincidences are real and not ERRORS.

How is my data pool so low? Is there ANYTHING that I can do to get more people to order? I'm getting desperate here. I didn't intend for my results-embargo to last for so long.

I'm in a moral-dilema and don't know how to tackle this one...

At this point I don't plan on releasing anything at all until I have 10 receipts of genome tests or raw data sets submitted from people who have already told me that they are in the mail. I'll start the count now and release this information on my site once I have met the limit of 10 more genomes either submitted or ordered from 23andMe. Until then I will be posting other information on my site surrounding the project and other leads.

https://www.23andme.com/

[DrugsAreBad]

Ghost,

I can only speculate as to why people aren't donating. As for myself, I haven't taken the test and I believe you disqualified me since I didn't use an SSRI. I suppose I could take it anyway, but I agree with your reasoning. This is complicated enough without widening the scope.

I suspect many people are young and simply don't have the money to spend. Perhaps people are also hesitant to share their data due to privary concerns, or even a lack of understanding of what the project is. Many people are just discovering what's happening are are "busy" dealing with their issues.

I think the most constructive way forward is to share as much data as possible with as many people as possible. No one knows who will crack this and who will contribute insight, so the best bet seems to be to get as many as possible involved. That's not the same thing as everyone, which will never happen. Most people will never be involved with any sort of research. Many people aren't inquisitive and don't take the initiative to read new literature. But some do and the more people have access to information, the greater the probability that the right people will find relevant information.

It would be a shame if the information you've gathered, which from what I understand is quite unique, would disappear. Maybe you'll crack this. Maybe you'll contribute to cracking it. Maybe you'll give up and years from now someone else will find the information on the internet and draw conslusions you missed.

Edit:

I don't think people are motivated by an "embargo". People are drawn in by a positive spirit of collaboration.

An "embargo" is something that creates negative emotions, hostility that contributes to a rift.

I understand you don't want to share with others who aren't sharing, but it still seems that the best way to get people to do anything is to inspire, as opposed to using negative emotion. That won't get everyone on board, but it helps.

As a sidenote, I think you're doing this very well in general. There are far too many people who focus on their own ego. I think you've done a great job rising above petty arguments and focusing on the goal.

[Timm Thaler]

Hi Ghost,

I registered my kit on July, 22nd and it is currently at the state of DNA extraction. I will email you a screenshot of the 23 status update.
I can't wait to get and send you the raw data and support your great work!
Best, T.

[Ghost]

Thanks, guys. Some good insights.

For any people who haven't yet donated, is there anything I could do to help convince them to do so? I have the money for those who don't.

I apologize for assuming that no one is helping. I have gotten a few messages of people who ordered but it's not done yet. As long as I see we are making progress I will be fine opening up more information to all. I just felt we were stagnating in numbers, but maybe that was on the end of 23andme and not from our support. It looks like they are backlogged.

[Ghost]

Thanks, guys. Some good insights.

For any people who haven't yet donated, is there anything I could do to help convince them to do so? I have the money for those who don't.

I apologize for assuming that no one is helping. I have gotten a few messages of people who ordered but it's not done yet. As long as I see we are making progress I will be fine opening up more information to all. I just felt we were stagnating in numbers, but maybe that was on the end of 23andme and not from our support. It looks like they are backlogged.

[fema4psyciatrists]

Mine is in the last step of processing it according to the 23andme website.

[sinceCelexa2010]

Just requested my raw data.

[GIXXER]

I say release the new data you've discovered. Maybe this will encourage more people to get their DNA done to see if they have it