XMRV Positive? What are your symptoms/medical history?

[leaves]

I dont really know the trigger, please make that anoption too. Also i have appetite distubances; sometimes i amjust hungry all The time....

 

[Advocate]

I think we need to ask age of onset or the answers to the educational level question could be misleading

Question about educational level:

At what age did you become ill?

What is your level of educational attainment: (1) GCSE (U.S. equivalent) (2) A level (U.S equivalent (3) degree (4) post-graduate degree.

Hi countrygirl,

Did anyone work on this yet? If not, I'll give it a go. One thing I'd like to include is some way of asking people if they graduated from a particular level, or dropped out because of illness, or were home schooled or tutored.

 

[cfs since 1998]

Oh and I have a suggestion for a symptom question. We should ask about crimson crescents:
http://www.immunesupport.com/93sum007.htm

Any thoughts? Can we ask about this?

 

[_Kim_]

Any thoughts? Can we ask about this?

Absolutely!! I just haven't put in any of the suggestions that have been made since - maybe Thursday. I should have time tomorrow to get everyone's suggestions into the survey.

 

[cfs since 1998]

Absolutely!! I just haven't put in any of the suggestions that have been made since - maybe Thursday. I should have time tomorrow to get to everyone's suggestions into the survey.

I see. Sorry, I didn't know that. I am kinda lost with the thread, almost to 30 pages!

 

[Hope123]

I should put this in a another thread because it might be helpful for those looking for stats for advocacy (moderators - move and retitle if you want) but it might be interesting to especially include items that have been used in other surveys for comparison.

Aside from the CFIDS Association survey, here are two from AFME in the UK and one (which includes FM patients) from a general webpage:

1. http://www.afme.org.uk/res/img/resources/Survey Summary Report 2008.pdf

2. http://www.afme.org.uk/res/img/resources/Facts and Figures.pdf

3. http://www.fmcfsme.com/survey_results.php

 

[Martlet]

Any thoughts? Can we ask about this?

I'm glad you mentioned this.

 

[Advocate]

How far did you get in school before getting sick?

A couple of people have suggested we ask about levels of education. I’ll make a stab at it here:

I attended:
(Boxes to check off: Completed? Dropped out due to illness? Home schooled/tutored? Online study only?)

Primary school
Secondary school
Bachelor’s degree
Master’s degree
Doctor of Philosophy

Hi Martlet,

I believe you have lived in both the US and UK. Do the terms "primary" and "secondary" have meaning in the UK?

 

[FernRhizome]

Hi Folks:

When I took the "test" survey I accidentally clicked "postive" for XMRV and then I couldn't unclick it to fix the error. So hope that's a fixable situation.

Also, I do hope we can include blood type as a test and which time, A positive, A negative, B, or O. (Do I have those four blood types right?)

This is such an amazing forum! ~FernRhizome

 

[Advocate]

I do hope we can include blood type as a test and which time, A positive, A negative, B, or O. (Do I have those four blood types right?)

Someone also requested Rh-negative inclusion.

 

[coxy]

Are we all supposed to be taking the survey then, i thought it was for XMRV+ only+?

Hi Folks:

When I took the "test" survey I accidentally clicked "postive" for XMRV and then I couldn't unclick it to fix the error. So hope that's a fixable situation.

Also, I do hope we can include blood type as a test and which time, A positive, A negative, B, or O. (Do I have those four blood types right?)

This is such an amazing forum! ~FernRhizome

 

[Dainty]

I have no idea if this symptom is shared by anyone else, but thought I'd throw it out there in case it was something anyone thought it should be added to the survey...

What about the pads of your fingers being permanently wrinkled or "pruned", similar to what happens when you stay in a bath for too long only it is not transient? I've seen enough elderly hands to know it normally starts to happen after a certain age, but as a 20-year-old I can't classify this symptom as normal aging. It's been a couple years with it, now, and shows no signs of going away. A minor detail, of course, but just in case some people share the same symptom...

Edit: I haven't been tested for XMRV...I may have misunderstood this thread. Reading it over I thought everyone was offering suggestions, but now I'm not so sure. Oh well...it's the brain fog talking...

 

[coxy]

i noticed something weird about my hands right at the beginning of my illness, as though my hands were suddenly dead! I could put them under very very hot water and not feel much. Also i get dents in my fingers easily as though theres no blood in them. I could even stick a needle into my fingers without feeling it. It's not so bad as it was, but my fingers still dent inwards easily, the skin doesn't spring back . They are often freezing, i wear gloves indoors a lot.

I have no idea if this symptom is shared by anyone else, but thought I'd throw it out there in case it was something anyone thought it should be added to the survey...

What about the pads of your fingers being permanently wrinkled or "pruned", similar to what happens when you stay in a bath for too long only it is not transient? I've seen enough elderly hands to know it normally starts to happen after a certain age, but as a 20-year-old I can't classify this symptom as normal aging. It's been a couple years with it, now, and shows no signs of going away. A minor detail, of course, but just in case some people share the same symptom...

Edit: I haven't been tested for XMRV...I may have misunderstood this thread. Reading it over I thought everyone was offering suggestions, but now I'm not so sure. Oh well...it's the brain fog talking...

 

[ukxmrv]

I am XMRV+

Yes to the dead hands with little feeling. We call them the "asbestos fingers" in my house.

No wrinkled pads on my hands but a deterioration in the finger pads and finger prints (as reported early on by Cheney)

A couple of things stick out from other contributions

Osteoporosis in family (unusual, severe and young)
Crimson crescents - yes please add this

I've been through the survey and would like to add


3.

Daytime urinary frequency (total lack of daytime urine)

worsening of symptoms under increased stress - separate physical or emotional as I react differently




5.

My current Autonomic Nervous System symptoms include

sweating - none. I stopped sweating altogether (except with acute infections, no sweat in response to exercise, sauna etc)


6. separate flu like and hangover please. They are different and I have them at different times

8
Hyper mobile joints

10.

Sensation of extreme heat in limbs but no sweating

Alert at night but not insomnia (i.e. a night owl)

11 - all over nerve pain

12

Sulphur items and sulphur foods (i.e. broccoli)

17

QEEG
Babinski's sign
Reflex brisk or abnormal
Poor mans Tilt table test


Other
======

Were you part of a recorded epidemic?

Early cancer deaths

 

[Advocate]

Are we all supposed to be taking the survey then, i thought it was for XMRV+ only+?

My understanding is that we can all take the survey now because it doesn't count. The main purpose of taking it now would be to see it and then come back to this list and offer suggestions for improvement.

It's not "live," as Kim put it. At first it was not registering any votes, but she might have changed it so that it registers votes--or at least write-in notations of symptoms.

Kim, can you clarify?

At first, the consensus seemed to be that we wanted to find out what symptoms and medical history the xmrv+s have in common.

Then, I believe that most people thought it would be good to try to find out what differences exist between xmrv+s and xmrv-s. This would restrict the survey to people who have been tested.

Finally, someone suggested that there be some mechanism whereby others take it, too--people who have not been tested.

My personal interest is in people who have been tested. But I think we do need a wider group to help construct the survey. For one thing, a lot of people who have not been tested are planning or hoping to be tested in the future.

 

[Advocate]

Hi ukxmrv,

Good suggestions. Interesting about the osteoporosis in your family--early and young. Do you have any theories about what causes it?

What did your QEEG show?
What happens when you eat sulfur foods?

 

[_Kim_]

My understanding is that we can all take the survey now because it doesn't count. The main purpose of taking it now would be to see it and then come back to this list and offer suggestions for improvement.

It's not "live," as Kim put it. At first it was not registering any votes, but she might have changed it so that it registers votes--or at least write-in notations of symptoms.
Kim, can you clarify?

You're right Advocate. The test version that's up there doesn't count. In fact, I'm going to get started on updating the Survey and all of the results will be zeroed out again. I can see that the survey was taken 16 times since my last update. Thanks to all of you who took the time to look it over so far.

At first, the consensus seemed to be that we wanted to find out what symptoms and medical history the xmrv+s have in common.

Then, I believe that most people thought it would be good to try to find out what differences exist between xmrv+s and xmrv-s. This would restrict the survey to people who have been tested.

Finally, someone suggested that there be some mechanism whereby others take it, too--people who have not been tested.

My personal interest is in people who have been tested. But I think we do need a wider group to help construct the survey. For one thing, a lot of people who have not been tested are planning or hoping to be tested in the future.

That's right. We'll put out 3 versions of the survey. XMRV Positive, XMRV Negative, and Not Tested. Like Advocate, I'm interested in the XMRV Positive survey results, but we can certainly learn from the other two as well.

 

[_Kim_]

The question came up about retaking the survey, once it's LIVE (right now you can take it as many times as you wish. Answer/don't answer any of the questions)

The following options control how participants take the survey:

• Take survey once
• Take survey once and return to edit survey
• Take survey many times

Kwik Surveys places a cookie on the computer that the survey has been taken on


The above options will only work if cookies are enabled and the same computer is used.

 

[hensue]

diagnosis? Make sure these are diagnosis by doctor not just ourselves. Just something to point out.

 

[_Kim_]

In fact, I was thinking last night that a question about Ehlers-Danlos might be good.
Sushi

Added EDS to question #18 - I have been diagnosed with: