XMRV+ Positive Survey Launch

Thanks for all the positive feedback!

I am so happy that people are already doing (and done!!) the survey. I am just really looking forward to the results and seeing how many sausages we can get out of this thing.

The bowels of the survey

There's a map in the bowels of the survey software that automatically adds a colored dot to the appropriate country whenever a survey taker has clicked on the country he lives in and has completed the survey. We tried to transfer that map to the header on the Home Page, but ran into difficulty.

I brazenly use the editorial "we." I know nothing about these things, but I do love maps, and I wanted to have a world map like the one on Judy Mikovits's slide, the one that showed where HTLV is found.

Anyway, now I see some faint green dots mysteriously appearing on the U.S. map in our survey header. Kim, are you putting them there manually? (Kim is always mucking about in the bowels.)

Advocate

That's me mucking around in hip waders. Yeah, I just updated the map again when I saw that EIGHT people had completed the survey.

You guys ROCK!!! I love seeing your little dots pop up on the map.

It is pretty! I'm blown away. I just searched for xmrv positive and a lot of things came up. Then I tried xmrv+ and these posts came up top!

Wow, you guys, this is amazing! It's crazy that you pulled off such a huge undertaking so quietly!

Amazing!

Truly!

Congratulations on such a professionally done survey. Did you guys have medical or research help from anyone? Really a superb job!

I dig the map....feels a little more connected with everyone. I'm that dot waving to everyone...

Yes, 59 experts on ME/CFS helped us

:victory::Sign Good Job:no that dot is me waving at everyone lol

That was a huge undertaking and Thanks so much!

how and when will the data be evaluated as you go along or all at one time?

From time to time we will post and update results on the homepage.

I just love you smart people!!

Not much to add except a that I really appreciate the very professional job you've done. The page looks great and the questions are well very well written. I'm always struck by the talent found on PR and the rich lives that we all used to live. It comes through loud and clear in a project like this.

Kim, Advocate, Julius, & Anonymous - you rock!

Thank you!

Hensue, I ran a quick summary report on the 9 responses that are in so far. I found the answers to these two questions interesting. 3 out of 9 reported that they'd received a blood transfusion or tissue transplant!

And you are of mixed opinion on trying ARV Therapy

Thanks Wildaisy!! The software picks up your IP address and maps it, so it is accurate only if your IP address is not a proxy. It's approximate, I'd say. The software places a new dot on the map every time someone finishes the survey. I'm just copying that image and inserting in our header. I think I see you on the map now!!

It's quite amazing!

I'm so impressed!!!

I am so excited by this survey,

it feels like we're finally going to get some decent diagnositic statistics,

I hope this gets filled in by all XMRV positives, I don'y know how far our reach is, but I hope we have some patient groups getting knowledge of this survey out their.

If people are either bedbound, or without internet connection in the UK, i would be happy to try and help someone fill it via the phone,although that would mess the map up.

If anyone thinks I can be of help with this please PM with and for details.

I haven't been tested so checking out everyones symptoms and seeing how close they are to mine is the next best thing.

again big thanks for the survey.

And all the XMRV poistives, thank you for having courage to get tested wether by co-operating in a study, or by risking your limited funds, and thank loads and loads for filling the survey in, your contributions really are invaluable.

WOW!!!




to all who made this happen!!!!!!!!!!!!!!!!!!!!!

Labs

Hi Kim & Others,

Question 3 in the XMRV+ survey presents a list of labs/methods that does not allow the respondent to add a new lab/method that is not on the list.

VIP Dx - PCR
VIP Dx - Culture
WPI (as study subject) - PCR
WPI (as study subject) - Culture
WPI (as study subject) - Serology (Antibody)
WPI (as study subject) - Western Blot
Clongen Lab
Direct Resonance Testing


There are other labs testing for XMRV and I know that at least some patients have received their results. Is there a mechanism for writing in a lab/method that isn't listed until the new lab can be added to the permanent list? and if not, could one be added? These other labs are potentially very intersting (perhaps the most interesting) as they could validate the original WPI findings.

Thanks,

Shane

I love the map - it makes it all so exciting.