XMRV Positive? What are your symptoms/medical history?

[_Kim_]

I am doing the test survey and I still have a problem with the question about remission. The only time that my symptoms have lifted at all were during pregnancy and never at any other time. That doesn't seem the same to me as a remission for other reasons. Or maybe there are lots of reasons for remissions (would love to know what they are because I'd love a remission). Also after all the discussion on hormones and progesterone on another thread are there any questions about hormonal issues that could be asked? There seems to be a divide between people helped and made worse by progesterone - whether that is pregnancy, the pill or other forms of progesterone.

I haven't updated the remission question yet. Hang in there.

 

[fds66]

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?

 

[_Kim_]

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.

 

[hensue]

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?

 

[fds66]

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.

 

[fds66]

Body temperature:

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

 

[_Kim_]

Hi Kim,

Just went through it again, looking better and better all the time.

A couple thoughts.

section 3
fatigue that is incapacitating and unrelieved by sleep......maybe split into two questions?

Done.

sect 4
inability to block out background noise and focus on conversation......also two separate questions?

Done:
Inability to block out background noise
Inability to follow a conversation

and I still feel that a section titled 'endocrine function' should be added. Answers would be;
salivary cortisol ............normal ... low ... high ... not tested
testosterone (any) ........ normal ... low ... high ... not tested
Thyroid function ..........normal ...low ....high...not tested
(and any other hormonal imbalances common to CFS, if anyone has any to add)

Does this new question cover it?

My endocrine functioning test results show:

Choose: [normal] [low] [high] [not tested]

• Salivary cortisol
• Testosterone
• Progesterone
• Estrogen
• Thyroid (TSH)

 

[gracenote]

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:

 

[julius]

Kim,

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.

 

[julius]

Done.

Done:
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]

• Salivary cortisol
• Testosterone
• Progesterone
• Estrogen
• Thyroid (TSH)

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?

 

[_Kim_]

I know I'm showing up a little late, and I haven't tried to read the survey, but things I would want to know are

1) Any RH factor issues? Do you or mom have RH negative blood type.

2) Any carpal tunnel issues

3) Any appendicitis

4) Arthritis

Added Blood Type question to first page.
Arthritis is in there already.
Carpal Tunnel Syndrome added to Pain question.

Appendicitis? Where to put it?

 

[fds66]

Thanks for all your hard work Kim and everyone.

Off to bed

Goodnight

 

[_Kim_]

Kim,

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.

How does this sound julius?

1)
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

 

[julius]

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.

 

[_Kim_]

That is so weird,!! In my family we have the same (except for cervical cancer and me) !! I have it too... and I tested positive. Another symptom I have I forgot about; huge drops in blood sugar and another one; osteoporosis. Oh and also hair loss, hick ups and chills.

Chills, hiccups, hair loss, osteoporosis added.
Hypoglycemia was already in there.

 

[_Kim_]

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.

Terrific! I put it in the welcome paragraph.

 

[_Kim_]

Oh this survey looks fabulous! I can't wait to take it "officially"....I didn't see osteoporosis listed. Would it be possible to list osteoporosis? And if someone clicks "yes" for it could it then also ask for spine t-score amount and age? Also you might consider adding "gastroparesis" to the list of gut symptoms. And was mitochondrial disease listed? Some of us have had muscle biopsies for mito disease. What great work!!! Thanks Kim and Advocate!

Also I have a symptom that when I go to bed at night my muscles often won't relax for two hours.....does anyone else have that? It's a hard thing to describe in a few words! ~FernRhizome

Osteoporosis, Gastroparesis, and Mitochondrial Disease have been added.

 

[_Kim_]

I just took the survey! Great work! How did you do this so fast!!!??? I added some additions but a few more things that there wasn't a particular place to put might be the following: Specify what types of cancers folks have had, add asperger's separately from autism, I was surprised not to see Dr. Bell's scale used for disability, perhaps make a spot for other genetic findings? for instance I discovered that I have carrier status for gaucher's disease. Maybe that will turn out to be a predisposition? So perhaps ask if folks have any known gentic predispositons. Also I am missing a P450 liver enzyme. That's another good genetics question. Maybe a special section for genetics questions, known mutations or single rather than paired genes, or carrier status. Also there is now a connection between strep throat reactivation and OCD...wonder if that will turn out to be XMRV related? Can't wait to take the final survey! This is a fantastic forum! Great thread! ~FernRhizome

Asperger's added.

A genetics question sounds good, but I don't know enough about it to write the question.

 

[_Kim_]

Bravo, you guys. Really well done. Can't wait to see it grow. Thanks for all your hard work.

Maybe add HHV-7 to the viruses?

HHV-7 added

 

[_Kim_]

Absolutely right Coxy. I remember, (I rarely get to say that so I'll say it again) I remember Dr Charles Shepherd saying sometime in the Dark Ages that there was quite a significant correlation (?16%) between Gilbert's and M.E. There are conflicting reports about the symptoms of this problem. Doctors say it is more-or-less symptom free, apart from mild jaundice, but patients say that they experience a number of nasties, including fatigue.

I have it too.

Added Gilbert's Syndrome