Starting threads only to see them closed down

Well its just me. but if I wanted a NAMI I would go there.
But paranoid that I am I like anon.
Yea that can lead to trouble.
I used to get upset at some people but then I realize they’re just sick
So don’t take it personally…

4 Likes

Well, my point was that if an individual was posting a lot of sickness, we could contact them or their family and get them help. Instead we’re stuck because it’s all anonymous, moderators can possibly delete it is all.

1 Like

Unfortunately I really don’t think using your real name on the Internet is ever a good idea - given the illness we talk about. There is always risk of prejudice that I would never want to expose people to.

On the idea of a third forum for family and patients - I’m sorry, I just don’t have $1,200 to throw that that issue right now - perhaps next year.

8 Likes

I participated in a couple NIH research studies and was paid $420 for 2 days.

The cab driver that drove me from the airport to Bethesda said that participants came from international locations. He had driven a guy the day before who flew in from overseas to participate in a study claiming to have inhaled a spore and thought he had a tree growing in his lungs. Prolly a sz patient - lol

I don’t understand how so much of the forum conversation really comes from offshore while they criticize and or post troll-like text yet use this for free. I’m pointing my finger at somebody clawing to be from England here. I suppose having moderators from other countries is one idea , but they should help in the fundraising. Feels like the United States gives everything away for free. Even support for mental health, epi pens, anything and everything.

I do miss the guy from Finland cannot remember his avatar.

Thats great - how did you find out about it? How can other people participate in them?

This is helpful information.

I went to the NIH website and volunteered for a Sz research study. I emailed the contact for the study, they gathered all my medical records, flew me out to Bethesda, free airfare, free ride from the airport, free lodging at the NIMH for 2 days.

The cost for my airfare and lodging had to cost over $1200.

It was a great 2 days at the NIMH for me :grinning:

2 Likes

Here’s the link

http://www.nimh.nih.gov/labs-at-nimh/join-a-study/index.shtml

1 Like

I found this forum around the same time as I found the research study. I was a graduate student like @mortimermouse

What a great opportunity!

Here is the exact page for the Schizophrenia research so that other people can enjoy the vacation to Washington DC area, even International visitors!

or:

To find out if you qualify, email NIMH or call 1-301-435-8970 (1-888-674-6464) [TTY: 1-866-411-1010].

1 Like

Complainers are the worst.

Theres my complaint :smile:

2 Likes

This study was the one I did, then I participated in one because I don’t have Sz they said, (neurologist and a clinical psychologist) but psychosis NOS.

Didn’t want my genes for the Sz study because my psychosis had another cause, most helpful information I received ever!

http://www.nimh.nih.gov/labs-at-nimh/join-a-study/trials/adult-studies/the-nimh-genetic-study-of-schizophrenia.shtml

1 Like

O Yea so did it over 20 years ago, I posted it at the time. It was great fun and they treat you real nice, except for poking me full of holes and keeping me on a pic line inside a F-NMR probably one in the world at that time. So I did it for science, not the money, but they do pay you. I was able to drive myself from a Maryland location I won’t reveal because I’m anon! :slight_smile:

So go for it guys!

1 Like

i live in uk is there one there? xx

1 Like

Does the National Health Service NHS do research? that’s sorta like NIH.

1 Like

Yes I’ve participated in a few research projects in the uk with the NHS

2 Likes

i will ask my nurse tomorrow xx thank you xx @katwomansz xx

1 Like

I really appreciate the time and effort you put into your news topics. I’m in a weird situation where I’m currently seeing three psychiatrists, and the fact is that I’m still getting more and better info from you than I am from them when it comes to the state of SZ treatment. You do fantastic work researching and then sharing this info. If you aren’t running your own info site, please consider doing so.

4 Likes

I second that. Really appreciate your postings Firemonkey!

4 Likes

3 Pdocs? Why 3?

Found an old pdoc on Facebook as a lark and thanked him for actually listening to me and working with me. He’s the reason I have a good life today and I told him that. I had moved on to another pdoc before I got to a really high level of function, however, so this doc was pretty much blown away to realize how well I was doing as he also had me pegged for a life in a group home. He is now retired, but he referred me two to of his younger colleagues who are looking into setting up a research project involving SZs with a poor prognosis. They want to identify and investigate more cases like mine.

So I’m talking to the 2 pdocs a fair bit by Google Hangout and also my regular pdoc infrequently.

3 Likes