XMRV+ Positive Survey Launch

[_Kim_]

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:

May 12, 2010.

In honor of CFS Awareness Day, we are proud to announce the launch of the XMRV+ Positive Survey. This is a grassroots effort that was initiated by 59 members of the Phoenix Rising forums. Our goal is to ascertain whether there are any signs or symptoms that correlate with XMRV retroviral infection.

We hope that this information can be useful for people with ME/CFS who are trying to make sense of their experiences. It is also our hope that this information may be helpful for clinicians in making a decision whether or not to test for XMRV infection. Furthermore, insights gleaned from this study may lead to new questions or understanding for researchers studying ME/CFS.

Who can take the survey?

If you have tested positive for XMRV by any means (e.g. research study, commercial laboratory), we invite you to complete the survey. Parents of children under the age of 18 and caregivers for those who are too ill to complete the survey unassisted may complete the survey on their behalf.

To take the XMRV+ Positive Survey or for more information, please go to our XMRV+ Positive Survey website:

http://xmrvpositive.health.officelive.com

What if I'm not XMRV+ or have not been tested?

We have created a Sample XMRV+ Positive Survey for you to view. It is not the actual survey and any responses will not be recorded, but it is otherwise identical to the actual survey.

http://www.surveygizmo.com/s/295365/sample-xmrv-positive-survey

Who is the XMRV+ Positive Survey team?

We are an ad hoc committee of four people who have worked together to bring this survey to a place on the internet where all of those who have tested positive for XMRV can report their symptoms.

We hope that the survey will help find answers to this important question: What do people who test positive for XMRV have in common?


Thank you,

The XMRV+ Positive Survey team
(_Kim_, Advocate, julius, and friends)
xmrvpositive@live.com

[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]

 

[fds66]

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

 

[VillageLife]

this is brilliant, you must be proud!

 

[Kati]

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

 

[rebecca1995]

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

:Sign Good Job:​

 

[Adam]

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:

 

[subtr4ct]

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?

 

[gracenote]

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.

 

[Dreambirdie]

Great Job, you brilliant devoted persevering geniuses!

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

BIG HUGS to all of you!

 

[_Kim_]

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?

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.

 

[Jerry S]

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:​

 

[_Kim_]

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.

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.

 

[MEKoan]

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

Thank you very much indeed for creating this remarkable tool!

It is seriously impressive!

:Sign Good Job:

 

[_Kim_]

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.

 

[flybro]

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

Thank you very much indeed for creating this remarkable tool!

It is seriously impressive!

:Sign Good Job:

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.

 

[leelaplay]

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

Thank you very much indeed for creating this remarkable tool!

It is seriously impressive!

:Sign Good Job:

Great Job, you brilliant devoted persevering geniuses!

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

BIG HUGS to all of you!

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

 

[Otis]

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

Thank you very much indeed for creating this remarkable tool!

It is seriously impressive!

:Sign Good Job:

What Koan said. Ditto!

 

[Cloud]

impressive! Thank you!

 

[Advocate]

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

 

[MEKoan]

Advocate ~

You really made me smile!

Yes the internet is great!

Thanks again,
Koan