Thoughts on Tracking Project

weegie1 · Post by **weegie1** » Mon Feb 22, 2010 12:01 pm

Since the Tracking Project is just that, would it be useful to have somewhere where the accounts in the Tracking Project could be discussed without messing up that topic.

CRHInv · Post by **CRHInv** » Mon Feb 22, 2010 1:13 pm

Often the people listed in the tracking project have a thread that was started just before the procedure and then maybe another one after the procedure. If you have a question or comment about one person, those threads would be good to use. The person would be notified by email that there is an update to their thread. If you start a new thread and wanted input from the patient, it could go unnoticed for awhile.

To find an old thread go to the person's profile by clicking the "profile" button under one of their posts, then click on "Find all posts by so and so"(on the right under "Total Posts"), and browse. The date of their intervention on their signature line might help narrow things down.

hth,
Beth

Cece · Post by **Cece** » Mon Feb 22, 2010 4:52 pm

we could do a master thread that had links to each of the individual accounts when people have had the procedure to done...they do make for good informative uplifting reading. This would not have to be a sticky, just a master thread.

CRHInv · Post by **CRHInv** » Mon Feb 22, 2010 5:40 pm

I like your idea Cece. When I was new here I spent a great deal of time tracing patients stories, backwards, so to speak. It was an awful lot of work for my fuzzy little brain.

LR1234 · Post by **LR1234** » Tue Feb 23, 2010 1:33 am

I have written a note in bold on the top of my tracking post asking people not to post in this section unless writing a tracking for CCSVI.
If everyone who has posted there could do this then I think people will get the message! (I am not there until page 3 or something) so we really need Marie/Cheer etc to do this x

CRHInv · Post by **CRHInv** » Tue Feb 23, 2010 5:12 am

lr - I thought that was pretty clear, but maybe not... there is a new post there today. I think jimmy moves them, is that right.
Beth

LR1234 · Post by **LR1234** » Tue Feb 23, 2010 5:18 am

I don't know, I haven't checked the thread. If Jimmy does then thats great:)

L

cah · Post by **cah** » Tue Feb 23, 2010 8:15 am

Yes, they are removed after some time - which I think is even better than removing them immediately.

What I've thought time and again about the tracking thread is that there might be some patients that want to tell their story but don't want to tell their name. I think not everybody wants to talk about bladder issues or libido problems in public. So their maybe should be a way to make an entry anonymously. Perhaps some other member could make it for them. But it has to be sure that there's no hoax. Don't know how to manage that.

bluesky63 · Post by **bluesky63** » Wed Feb 24, 2010 6:14 am

That's a perfect point -- I have often wanted to share info or give advice but I really want to maintain my privacy, not just for my sake but for my children's.

I am very aware that potentially thousands of people could be reading this stuff!

Your point about making sure the info is true is interesting.

There also should be objective measures -- just saying "my energy is better" or "my spasms have improved" is not the same as the EDSS or the fatigue scale. I like scales, surveys, numbers.

Speaking of numbers, for anonymity in clinical trials, aren't people assigned numbers instead of using their names? Something we could try for tracking.

Long story short -- I would be happy to say more if it were anonymous.

Post by **jimmylegs** » Wed Feb 24, 2010 6:26 am

members are free to set up new profiles with limited personal information, which they can use to post to the tracking project only.

cah · Post by **cah** » Wed Feb 24, 2010 7:03 am

Oh my, what a simple yet useable solution!