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XMRV Positive? What are your symptoms/medical history?

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

  1. Kati

    Kati Patient in training

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    What I would like to know is XMRV people have all major cognitive issues (that question needs to be formulated better in order to MEASURE the level of cognitive dysfunction
    And whether they are able to work outside of home/

    That's it for now, will see if I have anything else in mind later=
  2. Advocate

    Advocate Senior Member

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    Hi Summer,

    I've started preparing an alphabetical list that will incorporate everyone's suggestions.

    This will be a comprehensive list, not a short one. I've been frustrated by short lists that sometimes leave out what I think are the most important symptoms. I'm using what you posted above as a starting point.

    Maybe this will help us figure out what xmrv+ people have in common.
  3. _Kim_

    _Kim_ Guest

    Bless your cotton socks, as Koan would say. I've already done too much today and REALLY needed someone else to pick up the ball on this one. Thanks Advocate!! When you've got the list ready, just PM it to me and I'll insert it into the first post here.
  4. leaves

    leaves Senior Member

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    Thats so great that people are following up on this thread :) I think it will be very helpful, at least for me.
    Could there also be a section with like food intolerances, behavioral problems/ neurostuff/ social behavior, and type of immune problems (lupus, etc?), type of memory problems (numbers, or names, or orientation etc), assumed way of infection, and symptoms of close family members that are suspected to be xmrv positive,
    Maybe also interesting how the disease progresses (I always had memory problems, fatigue started much later).
    Thanks all :)
  5. gracenote

    gracenote All shall be well . . .

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    wanting lots of info

    If we get too detailed and complicated with our questions, will we have many who've tested positive for XMRV willing and able to respond? We're all wanting so much information. And those who've tested positive (and reported it here) are dealing with a lot right now. I'm just wondering.
  6. Countrygirl

    Countrygirl Senior Member

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    Has POTS been mentioned for the list? This is quite important. I think it might be interesting to ask whether someone who is XMRV + either never catches a cold or whether they get every infection around. People seem to fall into these two extremes. It may, of course, depend on the stage of illness. In the early years, I had persistent infection, but now haven't had a mild infection for decades.

    In the early years of the illness at least, 92% of folk are reported to be intolerant of alcohol. This is quite indicative of M.E. Could this be part of the poll?

    Insomnia and/or unrefeshing sleep is key.

    Subnormal temperatures and/or bouts of mild fever.

    Dyslexia and/or dyscalculia.

    There are so many..........a pan is about to boil dry .....have to go....
  7. flybro

    flybro Senior Member

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    pluto
    Have we got any database guru's on site?

    The resoan I ask is I beleive that if the questions are formated in a specific way that a database should be able to correlate the info, and make it a searchable for , symptomatic, , age of onset, remitting/persistent/regresseive, geographic, type of onset, severity, tested positive/negative for, helpful protocols, damning protocols, and on and on.

    This would be a good thing for all members as well, to enable those that may be negative for XMRV to find help. As we all know this is a wastepaper basket dx. Often people discover after years of being ignored, and tests being witheld because a CFS dx is in place, that a diagnosis of another disease gets missed for many years.

    Lastly, has someone requested family illnesses, including Autism, learning difaculties, ADHD, cancer, heart failure, MS, FM, obviously Fragile-X:Retro wink::Retro wink: and others.

    Cheers
  8. flybro

    flybro Senior Member

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    Hi gracenote, I wondered about this too, but we can go back to our posts and add or edit them. So it dosen't have to be done in one hit, which is fantastic as it makes the whole process organis and able to be added to over time.

    I think this could turn out to be the number one resource on the web for ppl with CFS, and those willing and able to help us.
  9. Katie

    Katie Guest

    I'm especially interested in childhood onset cases and XMRV as I am one. A question that shows age of onset and not just length of illness would be brilliant.

    I can't think of anything else yet. Katie
  10. _Kim_

    _Kim_ Guest

  11. hensue

    hensue Senior Member

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    If the survey is smple at first then we would see the things we have in common and diagnosis. Then if you want to go in to a more technical survey you could. I think more people would partcipate.

    Just to be able to glance at 10 top symptoms and see if we have any in common.

    Just my thought because some people might not want to divulge everything about their selves.
  12. _Kim_

    _Kim_ Guest

    I think we can have both - a top-10 symptoms poll attached to this thread and a lengthier survey.

    What are your top 10 symptoms, hensue?
  13. _Kim_

    _Kim_ Guest

    I'm getting excited thinking about our ability to create surveys. We have hundreds of guests that view the forums each day, yet they can't post to the polls unless they register. Participation in a survey, however, would be open to anyone on the net.
  14. hensue

    hensue Senior Member

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    you migh have to help with the more technical words

    Pain
    post exertional malaise in other words if I do anything like walk or try to clean in 24 hours I am in bed with flu symptoms.
    cannot sleep- take sleeping aids doesnt gaurantee I sleep
    unrefreshing sleep
    Headaches- right out of the blue get the worse headaches sometimes migraines
    Nausea- i have phenergan with me always
    Fatigue- I think it should be fiirst, severe fatigue
    cognitive dysfunction- it is getting worse everyday
    anxiety-
    what is a word when all your nerves and muscles are over excited and tremble and need to calm down even bladder spasms and such at times.
    As I said I am sure you can put this words into better terms.
    I think the worse is the flu type symptoms when I cannot get out of bed, sore throat hurt all over, voice weak, drainage in throat headache. I never know when that might occur
  15. Advocate

    Advocate Senior Member

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    Hi Kim, Hensue,

    To learn what symptoms xmrv+ people have in common, I don't think we need to set up a complex data base initially. I think we can do it by using a person (I'm willing) who will edit and update a survey daily.

    Kim said she could place such a survey--a sort of master list--at the beginning of a string to make it easy to find.

    I think we can build a symptom list from the ground up. Here are two ways of doing it that I've been thinking about:

    1) We could start with a long symptom list. I've already finished a three-page list based on what people here suggested and a few symptoms gathered from other sources.

    I could send this long list to xmrv+ people by Private Message; they could delete symptoms they don't have and send it back to me. (And of course they could add symptoms not on the list.)

    Then I could transfer their symptoms to the master list at the beginning of the string. I could mark the chosen symptoms with a simple 3-letter code for each person who participates.

    Eventually, some symptoms would be followed by a whole string of 3-letter codes, and we’d be able to see which symptoms are most prevalent.

    2) But I like the method Kim and Hensue are discussing also. If Hensue or any of the other xmrv+ people will give us (or me or someone) their top ten symptoms, the list can start at 10 and then grow appropriately.

    Again, I think we need one person who will update the list every day.

    I haven’t posted my three-page symptom list here because it’s, well, long…
  16. _Kim_

    _Kim_ Guest

    I found a free survey maker. I made a quick survey to see if this system will meet our needs. What do you think? It has unlimited questions, so we can make it as long/short as we like.

    Symptomometer Survey

    Survey Results
  17. Advocate

    Advocate Senior Member

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    Thanks, Hensue! This is valuable. I'm getting started right now what you've given us.

    I think we cross-posted, but I'll try to start on #2, below.
  18. Advocate

    Advocate Senior Member

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    Would you call it muscle twitching?
  19. Advocate

    Advocate Senior Member

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    Hi hensue,

    I liked your own words. Actually, I liked your words better than the terminology on some lists devised by professionals.

    In some cases I tried to translate your symptoms into the wording used in the Canadian consensus definition. Did I get it right? I wasn't sure, for example, if your flu-like symptoms appeared after exertion or more randomly.

    Below, I made a stab at starting to build a master symptom list.

    What symptoms do XMRV+ people have in common?

    Brain fog - HEN
    Cognitive dysfunction - HEN
    Flu-like symptoms after minimal physical or mental exertion - HEN
    Headaches - HEN
    Insomnia - HEN
    Migraines - HEN
    Muscle twitching - HEN
    Nausea - HEN
    Post-exertional fatigue - HEN
    Pain - HEN
    Sore throat - HEN
    Unrefreshing sleep - HEN
    Weak voice - HEN

    How strongly do you feel about putting anxiety on the symptom list? My own feeling is that it's too soon to include any mood-associated symptoms or symptoms generally considered to be psychological. I think that the "militant somatizers" might jump on those symptoms and say, "See? This person's illness couldn't possibly be associated with XMRV. Obviously all the symptoms are caused by anxiety." So I've left it off for now, but can put it back if you prefer.
  20. Advocate

    Advocate Senior Member

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    Hi Country Girl,

    I've added all your suggestions to the master list of symptoms (on my computer only, at this point). Maybe the list will be useful sometime just for jogging people's memory of symptoms.

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