XMRV+ Positive Survey Launch

[julius]

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

Yes Shane, you could let us know one of several ways.

1) You could add a comment at the end of the survey in the comment box
2) You could let us know on this thread
3) Email us at xmrvpositive@live.com (you can find this on the thank you page of our website)
4) PM any one of us.

We will really appreciate any feedback or suggestions, and if possible, we will try to add them or make changes to the survey where appropriate.

 

[Advocate]

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.

...These other labs are potentially very intersting (perhaps the most interesting) as they could validate the original WPI findings.

Excellent point, Shane. Kim is fixing it at this very moment. I'd like to give her something really nice. Here's a :horse:

Advocate

 

[Hope123]

Thanks for all your hard work, guys and gals!

OK, I just skimmed the survey but the section on specialized testing where "positive" or "negative" is used might be a bit confusing and why I didn't use these terms when I was working.

"Positive finding" to healthcare staff often means an abnormal finding whereas to the general public, the word "positive" means a good thing -- e.g. nothing unusual.

Conversely, "negative finding" to healthcare staff means normal findings whereas to the general public, the word "negative" means a bad thing -- something is wrong.

The use of these terms has actually been written about as causing confusion in the medical literature.

I don't know how survey takers interpret these terms - whether they use it more like healthcare staff or more like the general public. It might help to define it on the survey or to use "normal" vs. "abnormal."

 

[julius]

Thanks Hope123,

We decided to keep it as is for now. I think most people who are positive right now are pretty clued up about such things. After all, even knowing how to get the test shows they are pretty well informed.

Maybe later on when the test is available to everyone simply by visiting the local walk-in, then we may have to re-visit the issue.

Thanks for your comments and suggestions.
Keep em coming.

 

[judderwocky]

Wow.... is there a link I can get to post oon the xmrvaction site? I would love to send it to the people that signed the petition

 

[Advocate]

Wow.... is there a link I can get to post oon the xmrvaction site? I would love to send it to the people that signed the petition

Hi Judderwocky,

There are two links in my signature, and I think it's terrific that you have offered to send them to the people who signed the petition. Let me know if the links don't work. The last time I checked, 30 people from four countries had taken the survey. I am sure there are more people out there who are positive who would like to help us all learn what symptoms they have in common.

Advocate

 

[judderwocky]

Hi Judderwocky,

There are two links in my signature, and I think it's terrific that you have offered to send them to the people who signed the petition. Let me know if the links don't work. The last time I checked, 30 people from four countries had taken the survey. I am sure there are more people out there who are positive who would like to help us all learn what symptoms they have in common.

Advocate

http://www.xmrvaction.org/content/have-you-tested-xmrv-positive-take-survey

I'm going to put it in the Change.org list in the next update email i send out... i need to space the messages out by several days so i don't annoy people..... its already on the site though at the above link

 

[taniaaust1]

Is there a place where we can see how this survey has gone so far seeing there are 30 who have done it???? (many little studies use that kind of number of people in them). If not.. at what point will we be able to see how this survey is going??

 

[Advocate]

IMPORTANT ANNOUNCEMENT

Hi all,

Last January 14, Leaves started a thread called XMRV Positive? What are your symptoms/medical history?

Fifty-nine people pitched in to answer Leaves' question, and the thread ended up with a whopping 383 posts full of signs, symptoms, diagnoses and medical history.

An ad hoc committee, which grew out of that first thread, created a draft of a survey, and asked for help on a new thread, Help us with the XMRV Survey - feedback, proof-reading, and comments needed.

It was slow, painstaking work, but on May 12--CFIDS Awareness Day--we made our big announcement on this thread, XMRV+ Positive Survey Launch. We also announced that we had created a website dedicated to making it easy for people to take the survey.

We have some preliminary results from the survey, and today we are announcing the creation of a new blog dedicated to reporting those results.

The blog format will allow for comments and will stimulate discussion about the implications of the findings.

This format will also allow us to add small amounts of data periodically, so that reporting new results will be easy for us. We are tentatively planning to add data about once a week. Then when trends change, we'll all have a nice archive where we can see how that happened.

The blog also links us to Facebook and Twitter, and we are hoping that this will allow more XMRV+ people to learn about the survey--and take it.

You can go directly to the blog here, or you can access it through the survey website, where we have added a new Survey Results page.

If you are XMRV+ and have not taken this long and comprehensive survey, we urge you to do so. And please tell your friends who are XMRV+ that they should take it, too. Your participation will be a small step toward greater recognition of the severity of the diseases associated with this new retrovirus.

Advocate,
XMRV+ Survey team member

 

[ukxmrv]

Thank you, for all your hard work on the survey. Really great job on this.

 

[leaves]

Awesome!
Since filling out the survey a lot has happened. I now know about coinfections, cytokine profile etc. (And I have gotten worse in the mean time too unfortunately) But I guess there is no way to update your survey responses right?

Thanks for doing this great job!

Leaves

 

[Advocate]

Awesome!
But I guess there is no way to update your survey responses right?

Leaves

Hi leaves,

Unfortunately, there is no way to update survey responses. All of the responses are anonymous to us and we don't even have the email addresses of those who take the survey.

When we were creating the survey we considered doing two categories--one for XMRV+ and the other for XMRV-. We thought about comparing the two categories. Thank goodness we didn't do that, because many who were negative are now positive.

I'm sorry to hear that you are worse. It's beginning to look as though that's typical for those who are XMRV+. We'll know more when we have more survey takers.

In the last week, we've jumped from 38 to 43 responses. We will get there!

Advocate

 

[Advocate]

Hi leaves, ukxmrv and taniaaust1,

I just want to give you a little update on the XMRV+ Survey and let you know how things have progressed since you asked about results in September.

Some of the survey results were posted on the new blog we announced in September. I also posted some charts here.

At the end of September I had to resign from the committee for health reasons, which meant that the original four-member committee was reduced to one person--Kim--who was an administrator on this forum in the early days.

At the time I resigned, 55 people had taken the survey. Kim announced through a spokesperson this week that the number was into the 70s. She said that she will post some survey results when the number reaches 100.

So when people on the forum announce positive test results, it would help if you would remind them to take the survey. (I also remind people, usually by PM, but I’m sure I miss some.)

I’m eager to see some updated survey results because I think the data will help people take XMRV (and all HGRVS) seriously. Results from the survey will help build XMRV awareness, visibility, and sympathy. So spread the word!

If anyone has questions, Kim can be reached through her blog or xmrvpositive@live.com.

Many thanks,
Advocate

 

[leaves]

Hi Advocate
Many thanks for the update!
So sorry to hear you are doing worse.. and that is quite intense for Kim too to do this on her own.
ill try to remember sending people to the survey

 

[ukxmrv]

Thanks Advocate!

I'll try and drum up some more business for the survey and hopefully we'll reach our 100 mark soon

 

[taniaaust1]

Thanks Advocate, sorry to hear that your health took a turn for the worst (that seems to have happened to a whole heap of us who were regularly doing things here before ... I think we all burnt out). Congratulations on how much you did achieve

Those graphs are great, I really hope Kim manages to do an update some time. (thanks for your work to Kim).
.............................................

I think a little explaination at the bottom on the country graph would be good.. just to say that it isnt a good indication yet what is the prevalance of XMRV is in various places due to most countries still having no XMRV testing yet. (I still cant get tested here in Australia).