Help us with the XMRV Survey - feedback, proof-reading, and comments needed

[Dreambirdie]

Hi Kim--It looks really good overall. A few things to add would be:

heavy metal toxicity, in the triggers category, including the "installation" of amalgam fillings.

cardiac arrhythmia--PVC's atrial fibrilation (other than the T wave one you already have), in the symptoms category

And... lightning is misspelled. I know that word ALL TOO WELL.

 

[George]

@George - yeah I'm all over the place too.

Physical 50% (as of last week and this week, yeahhh! Before that it was 40%)
Cognitive 70%
Ability/severity 70%

-Rachel xx

Wow, this is way cool. I'm with Advocate (umm, no your signature is not working at this time. Keep trying!) I'm really glad that they divided it up into the three categories. This could be a major indicator into who has XMRV but also a big opportunity for individuals to see what areas they need to treat. The Physical/cognitive/pain difference really helps me to understand my own illness better.

 

[George]

loss of appitite is listed twice on the I CURRENTLY have these gastrointestinal symptoms: or number 24.

would you add steatorrhea - fatty, floating stool that is foul smelling and usally part of malabsorbtion??

Costochondritis is listed twice in number 26

 

[Dainty]

I see Hyperreflexia mentiond...what about adding hyporeflexia as well? I have virtually no reflexes...no only confirmed by the doctors, but the best case in point was when I was carying a pan full of boiling hot water and it tipped and spilled on my hand that was carrying it. Active reflexes would have resulted in immediate involuntary releasing of the pan and dropping it, but my grip never so much as loosened as I calmly set the pan down before tending to my hand.

ANother symptom that I can't find listed is that of miscalculating movement (I'm not sure what the technical name for it is). For example, you try to click on something and instead click on the thing right next to it, or you reach towards something to pick it up but instead knock it over, or you're walking past something and bump into it because you miscalculated your movements. This symptom for me is particualry frustrating when happens multiple times within the minute, and I wonder how many other people share it.

 

[George]

Kim I hope you are going to reset the test. I went through and took it in order to pay more attention to the details. I didn't put in stuff on the first page but did the others so that I could check each section. I hope that's not a problem.

 

[_Kim_]

Hi Kim--It looks really good overall. A few things to add would be:

heavy metal toxicity, in the triggers category, including the "installation" of amalgam fillings.

cardiac arrhythmia--PVC's atrial fibrilation (other than the T wave one you already have), in the symptoms category

And... lightning is misspelled. I know that word ALL TOO WELL.

Okay DB~

We'll add those symptoms. Good catch on the lightning typo. I added that item to the survey JUST FOR YOU!!!

 

[_Kim_]

Kim I hope you are going to reset the test. I went through and took it in order to pay more attention to the details. I didn't put in stuff on the first page but did the others so that I could check each section. I hope that's not a problem.

Go ahead and 'take it' as many times as you want right now. All of these results will be voided before we go LIVE. This phase is only to get feedback on the questions, not to look at the results (yet).

 

[garcia]

Kim,
great survey!
I have a few suggestions for symptoms you might want to include (feel free to ignore):

-vertical ridges on fingernails
-hair loss on ankles (for men)
-face blindness/ inability to recognize new faces (medical term: prosopagnosia)
-Weak joints

And finally TSH is a pretty poor indicator of thyroid function, but I can't necessarily think of an alternative, since thyroid function is difficult to pin down to 1 number.

good luck with the survey!

 

[hensue]

Garcia,
I have those vertical ridges on fingernails and face blindness omg.

 

[garcia]

Garcia,
I have those vertical ridges on fingernails and face blindness omg.

Hensue, I thought I was the only one with the face blindness! I'm pretty sure the vertical ridges are quite common in ME/CFS, though I haven't ever seen much talk of them. Be good to see how many others there are out there.

 

[julius]

Garcia,

I have all those things you mentioned. I always assumed everyone had those ridges. I learn something new every day on this forum.

Just a thought but, have you ever considered the possibility that you also have Asperger Syndrome. Face blindness is a fairly good indicator of that. I have both and I am curious about the connection between the two. Especially since WPI made the XMRV autism connection.

 

[Chris]

Hi; further to PEM symptoms; about an hour or more after exercise, I may get edge of rib costochondritis, raised blood pressure (sometimes substantial), slight headache, feeling tired, wired, want to lie down; and I want to cry because I know I have done it to myself once again. Chris

 

[FernRhizome]

Is there any chance that the survey section on osteoporosis could ask for specific bone density test results? There is a huge version between -2.5 t-scores in bone density and -5 t-scores in bone density for instance. At one end life is normal, at the other end death is right around the corner.....so if there's a way to ask folks who respond YES to osteoporosis if they could then be asked their t-score values it would be great. And their age correlation with their t-score. For instance I have -5 t-scores which are 90 year old bones but I am only 51. T-scores levels could be averaged to -2.5, -3.0, -3.5, -4.0, -4.5, -5.0 and -5.5 (after that one's pretty much not alive....)

If I can help any further with how this should be set up let me know. I think probably XMRV combined with bad bone genetics in some of us may make our bones are most likely downfall. (no pun intended.) ~FernRhizome

 

[spindrift]

It would also be interesting to know for how long people have had CFS. This could be calculated: age minus onset age.
It would be nice to have statistics on length of illness in relation to the other information to determine things like
do cognitive abilities tend to get worse with length of illness.

Another interesting thing would be what supplements, Rx and treatments helped with what symptoms. But that might
be a so elaborate that a other questionnaire could be made.

Many thanks to all working on this questionnaire.

 

[starryeyes]

Are you planning on creating ongoing bar graphs with this information? I think it's Survey Monkey that does this. I'm sorry I'm really out of it... you may have mentioned this already but I wanted to bring it up before I forgot again.

I took a long survey at Powersurge.com about perimeno and it automatically compiled all of the info into an ongoing bar graph which changed as new results poured in. At one point Anxiety was the number one symptom then that changed to Depression I think. It was really cool.

I'm bummed as I cannot find it on their site now so I emailed them to ask where it is and will let you see it if they still have it and get back to me.

Meanwhile, here's the SurveyMonkey site: http://www.surveymonkey.com/

 

[Marco]

Another man here with face blindness, fingernail ridges and hair loss on the ankles?

 

[Lily]

It would also be interesting to know for how long people have had CFS. This could be calculated: age minus onset age.
It would be nice to have statistics on length of illness in relation to the other information to determine things like
do cognitive abilities tend to get worse with length of illness.

Another interesting thing would be what supplements, Rx and treatments helped with what symptoms. But that might
be a so elaborate that a other questionnaire could be made.Many thanks to all working on this questionnaire.

I think the Rx/supplements/treatment for what symptoms would definitely need to be a separate survey and would be quite a bit more challenging, but hey - this is a very talented bunch!

 

[hensue]

I need to look up face blindesss, I thought it was just not recognizing new people you had met?

 

[thefreeprisoner]

_Kim_

I'm really concerned about the amount of work this must be generating for you.
Should we have a cut-off date for comments about the survey, to avoid this going on for ever and ever and focus everybody's minds?

Rachel xx

 

[Advocate]

Garcia,

Just a thought but, have you ever considered the possibility that you also have Asperger Syndrome. Face blindness is a fairly good indicator of that. I have both and I am curious about the connection between the two. Especially since WPI made the XMRV autism connection.

I have never, ever heard of face blindness in connection with CFS until Julius, Garcia and hensue brought it up. I think we are already making discoveries with this project.