Discussion in 'XMRV Testing, Treatment and Transmission' started by leaves, Jan 14, 2010.
I haven't updated the remission question yet. Hang in there.
OK, now body temperature. Does fluctuation in body temperature mean that the temperature I'd record if I took my temperature varies or does it mean that sometimes I'm boiling hot and can't cool down and sometimes I'm freezing cold and can't get warm?
I can see where that's ambiguous. If you can break it up into two different symptoms, I'll change it.
This might have already been discussed, bad headache today. When looking at the survey you ask if this symptoms are worse after physical exercise whatever? That is when I have the urinary burning and most nausea or stomache problems, urinary frequency, waking up all night. So we are listing it under flu like symptoms? Or did I miss that?
OK, so I've done it all and my concentration had gone by the end. I am glad you put in the facility to do it in parts. It is very comprehensive and I hope it will be of some use.
For me personally the temperature you record on a thermometer doesn't change much.
The problem I have is either feeling far too hot or far too cold when others are comfortable and the room is normal temperature and seeming unable to regulate my own temperature properly.
My brain has packed up after doing that questionaire so I'm really struggling to get a question out of that
Maybe - do you have problems with feeling extremes of temperature even in a comfortable room
or do you feel excessively hot or excessively cold even in a comfortable temperature
Or do you have problem regulating the temperature you feel
Sorry - not too helpful
Inability to block out background noise
Inability to follow a conversation
Does this new question cover it?
My endocrine functioning test results show:
Choose: [normal] [low] [high] [not tested]
Some quick thoughts on this latest version.
Will there be a question allowing the choice XMRV positive, negative, not yet tested? I didn't notice that.
Relatives: What about adding Alzheimer's and Lyme Disease?
Triggers: What about adding Pregnancy?
Sexual Dysfunction: What about unintended celibacy?
Diagnosis: I'm wondering about the inclusion of cancer I had malignant melanoma that was successfully treated. I'm not sure it had anything to do with CFS. More to do with genetics, fair skin and sunburns.
I still have a question about the percentages. If two people filled out the questionnaire and checked multiple symptoms, etc. I think the percentages would be more than 4% or whatever is showing up. If no one checks a symptom, it would be 0. If one of the two people checks a symptom it would be 50%. If both people check a symptom it would be 100% that have that symptom.
Okay, now that I've said this, that doesn't take into account the severity of the symptom. But something doesn't seem right about the percentages that are showing up. I may be confused, or on to something. Don't exactly know. :tongue:
Is this what you were looking for in terms of a welcome paragraph?
Please anyone feel free to edit or make suggestions
Thank you for participating in our survey. Our goal is to ascertain whether there are any
signs or symptoms which correlate strongly with XMRV infection.
We hope that this informatin can be useful for CFS sufferers 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 this new human pathogen.
Thanks so much Kim,
I don't know how you are able to do all of this, and keep up on other threads as well....are you sure you have CFS?
Added Blood Type question to first page.
Arthritis is in there already.
Carpal Tunnel Syndrome added to Pain question.
Appendicitis? Where to put it?
Thanks for all your hard work Kim and everyone.
Off to bed
How does this sound julius?
Thank you for participating in our survey. Our goal is to ascertain whether there are any signs or symptoms which correlate with XMRV retroviral infection.
We hope that this information can be useful for ME/CFS sufferers 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.
This survey can be taken all at once or you can return and finish at any time as long as you continue taking the survey on the same computer (and cookies have been enabled).
For this survey, consider a symptom as Current if it has occured within the last three months. Past symptoms are any that you experienced prior to three months ago.
This survey is the result of a collaborative effort undertaken by the members of the Phoenix Rising About ME/CFS forums. Please come visit us to learn more about ongoing projects, research, advocacy efforts, education and support for ME/CFS,
I am over 18 and agree to participate in this survey
I am an adult, completing the survey for a child under the age of 18
I am completing the survey for someone who is over 18, but needs assistance
That looks good to me.
After you mention enabling cookies, you could add this link http://www.google.com/support/websearch/bin/answer.py?hl=en&answer=35851 for instruction on how to enable cookies for various browsers.
Chills, hiccups, hair loss, osteoporosis added.
Hypoglycemia was already in there.
Terrific! I put it in the welcome paragraph.
Osteoporosis, Gastroparesis, and Mitochondrial Disease have been added.
A genetics question sounds good, but I don't know enough about it to write the question.
You can also try a Google Site Search
Separate names with a comma.