XMRV+ Positive Survey Launch

In January and February, we asked you to Help us with the XMRV Survey.
Thanks to all of the wonderful input, we were able to develop a research instrument that actually reflects patient experiences. We thank each of you who contributed to this project.

For those of you who are XMRV+ and would like to take the survey now, go to our XMRV+ Survey website. Please don't feel like you have to take it all at once. You can save your work and come back later (the program will email you a link to resume). Thank you in advance for your participation.

For the rest of you, I made a Sample XMRV+ Positive Survey for you to view. It is not the actual survey. Any responses entered will not be recorded.

Below is the notice that I have posted to Co-Cure:

[Just one last note. I would like to give special thanks to Advocate and julius who kept me motivated through this whole process. Their dedication to this project is what has allowed it to come to fruition despite my recent crashes. This was truly a team effort. ~Kim]

Wow, well done everyone. Great thing to happen today.

this is brilliant, you must be proud!

Julius, Advocate and Kim, thank you so much for your hard work!!!

Fabulous job, guys! The survey looks great. :victory::victory::victory:

:Sign Good Job:

Ditto from me. Some people work so hard for the rest of us.

:victory::victory:

Thanks to everyone who worked on this. I am sure that many of us are clamoring for this type of information. Where/how can we view results?

This looks excellent. Can't wait to see the responses coming in.

I printed out the sample survey (31 pages) so that I could read it on paper first for some reason, filling out surveys online is too challenging for me. I will take my time and respond to it as soon as I'm able.

I had no problems using Safari.

Great Job, you brilliant devoted persevering geniuses!

:victory::victory::victory: :Sign Good Job:

BIG HUGS to all of you!

We will post results on the website once we get some responses. If the WPI UK results come in soon, we should have enough "subjects" to get some early peeks into what this cohort looks like. Other possibilities for publication are being considered.

Excellent job!!!!!! This is the best survey of symptoms and history I've seen. The cognitive symptom list is especially good. Thanks Kim, Julius, Advocate!

It's amazing what a few good people can do! What a wonderful thing to do for May 12!

I tried making it through the sample survey at one go. Couldn't do it. :In bed:

:Sign Good Job: :Sign Good Job: :Sign Good Job:

gracenote,

That's a smart idea to print out the survey first. There is a lot of text in that thing (whew!). Marking your answers on paper first would make clicking through the online one so much easier.

Thanks for letting me know about Safari. One of our beta testers had problems viewing the page. I was hoping it would be okay.

:victory: Julius :victory: Advocate :victory: Kim :victory:

Thank you very much indeed for creating this remarkable tool!

It is seriously impressive!

:Sign Good Job:

Thank you to the four brave souls who have ALREADY completed the survey. One of the cool features of the survey software is that it displays a map and marks the locations of the responders with blue dots. I've just updated our website to show the current map. Check it out.

I love it when we speek with one mind, just to reiterate

:victory: Julius :victory: Advocate :victory: Kim :victory:

Thank you very much indeed for creating this remarkable tool!

It is seriously impressive!


appreciation in large lorry loads to you all.

what they said!

very impressive you 3 named marvels + 1 or more unnamed. Can't thank you enough for this. Think I'll follow gracenote's example and print it out. Especially love the map.

sb aka islandfinn

What Koan said. Ditto!

impressive! Thank you!

Hi all,

It makes me so happy to see that people are responding and are taking the survey. We tried really hard to honor everyone who contributed to it by including their symptoms.

Isn't our Survey website pretty! Isn't the internet great!

Advocate

Advocate ~

You really made me smile!

Yes the internet is great!

Thanks again,
Koan