1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

XMRV Positive? What are your symptoms/medical history?

Discussion in 'XMRV Testing, Treatment and Transmission' started by leaves, Jan 14, 2010.

  1. _Kim_

    _Kim_ Guest

    I haven't updated the remission question yet. Hang in there.
  2. fds66

    fds66 Senior Member

    Messages:
    225
    Likes:
    2
    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?
  3. _Kim_

    _Kim_ Guest

    I can see where that's ambiguous. If you can break it up into two different symptoms, I'll change it.
  4. hensue

    hensue Senior Member

    Messages:
    269
    Likes:
    1
    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?
  5. fds66

    fds66 Senior Member

    Messages:
    225
    Likes:
    2
    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.
  6. fds66

    fds66 Senior Member

    Messages:
    225
    Likes:
    2
    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
  7. _Kim_

    _Kim_ Guest

    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)
  8. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    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:
  9. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    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.
  10. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada


    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?;)
  11. _Kim_

    _Kim_ Guest

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

    Appendicitis? Where to put it?
  12. fds66

    fds66 Senior Member

    Messages:
    225
    Likes:
    2
    Thanks for all your hard work Kim and everyone.

    Off to bed

    Goodnight
  13. _Kim_

    _Kim_ Guest

    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
  14. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
  15. _Kim_

    _Kim_ Guest

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

    _Kim_ Guest

  17. _Kim_

    _Kim_ Guest

    Osteoporosis, Gastroparesis, and Mitochondrial Disease have been added.
  18. _Kim_

    _Kim_ Guest

    Asperger's added.

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

    _Kim_ Guest

    HHV-7 added
  20. _Kim_

    _Kim_ Guest

See more popular forum discussions.

Share This Page