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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. _Kim_

    _Kim_ Guest

    The results page is kinda crappy. If you go in and answer a few questions, you can see the results at the end. I am just using some free Survey software. It's fine for drafting this, but if you have other ideas about how to present this (or publish this), I'm all ears.
  2. cfs since 1998

    cfs since 1998 *****

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    So the owner of the suvey does not have more detailed results than that? I think it is important to know how the answers relate to each other rather than just knowing X% answered one way and X% answered another way. I suggest we host a survey directly on this site. I mentioned this earlier but you might not have seen my post. I can write a custom PHP script (or customize an existing one) that Cort could put up on the server, that way people won't have to leave the site to take the survey and we have better data access. Since I studied statistics extensively in college I know the best way to collect the data as well as how to analyze it.
  3. hensue

    hensue Senior Member

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    Who put the loud belly sounds? Gurgling in stomach cannot even sleep? Could not believe that was on there I thought I was the only one who did that.
    Kim this is wonderful you did a great survey. cfs can write a custom php script like you have made to put up on the server would be great. I have a nephew who is a statistician at the capital in Florida. I am very impressed with him and anyone who could do that all day.
    The results are phenomenal though! I am truly amazed at what they do it is not any easy job. Any stat you want a statisticain can come with it.
    I am sure with a custom script your results will be very accurate. Then if you wanted results or percentage of something you havent planned on or ommitted a category it would easy for cfs 1998 to put in or take out.
    I mean if this is going to be Holy Grail of Surveys we need to be able to crunch those numbers and get it precise.

    Your work on this survey is excellent I am just trying to put my 2 cents in.

    I do appreciate your hard work all day and night long!!!
  4. julius

    julius Watchoo lookin' at?

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    You could ask;

    salivary cortisol- high low normal not tested

    testosterone- high .....

    estrogen- same


    Normally these would be low in cfs, so including an option for high might not be necessary. I would specify that cortisol has to be salivary test as the normal blood test is not sensitive enough.

    As for ED, I am 36 yrs old and my testosterone level is the same as a 98 year old man...but all my parts work fine (not sure how to insert a smiley face, otherwise I would). I've never heard of ED in relation to CFS.
  5. hensue

    hensue Senior Member

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    I had another idea if possible most of my pain or the severe pain is when I overdo so the chart that was on the Dr Batemans webinar. Could we put that on there somehow and find out when people have the most problems.

    What I am trying to say is the worst pain I have and nausea and headache and urinating frequently chills are all about 24 hours after the physical exertion or mental. I would like to know if this is how other people react and what time frame and what happens to them.
  6. fds66

    fds66 Senior Member

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    It's looking good. I still think that under the pathogen section you need to take account of people like me who haven't been tested for any pathogens or otherwise it might skew your results. Perhaps an extra question in the section saying that my GP doesn't test me for anything or a positive/negative like for the other testing section.

    Also I have trouble with walking into things like door frames and knocking things over. Is that included in ataxia? And calling things by the wrong name completely and typing the wrong words in. Also when I write or type the letters don't come out the same order that they left my head.

    They are probably included somewhere but just thought I'd mention them anyway.

    Also, the only remission I've ever had was when I was pregnant and breastfeeding. The rest of the time I've had no remissions at all. Is there a way to take that into account?
  7. hensue

    hensue Senior Member

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    Swelling in lower extremeties legs and calves so tight I can barely bend my legs when I am having the post malaise
  8. julius

    julius Watchoo lookin' at?

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    hensue...I get that too. And doctors always have given me condescending looks when I tell them.
  9. julius

    julius Watchoo lookin' at?

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    i shhould clarfiy...i mean i get the leg swelling..ive never had bad exertional malaise.
  10. hensue

    hensue Senior Member

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    I am so anxious to see the results of this survey because I have no idea what all these symptoms will be? Or the percentage of them. I dont have the fainting or dizziness when standing. Then again I have never been on a tilt table so I dont know what would happen.
    I know most of these symptoms are so like mine and then some I pray to God I never get.

    What are your symptoms Julius? if you dont mind me asking
  11. julius

    julius Watchoo lookin' at?

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    I don't mind at all Hensue. But the list is probably as long as this survey we're working on. The biggies for me are the cognitive ones, like fog, memory attention, lack of co-ordination. I think it was you who mentioned running into things and dropping things...I got that too. Also bad fatigue, I can force my way through a day of work...but that's all I got. And unfortunately my fog is so bad that I can only do physical labor.

    One thing for me...and i don't think this would fit on the survey, but if anyone else has this problem let me know. I got sick at a very young age. So young that I don't remember not being sick, so I have no frame of reference. I don't know what a 'normal' energy level is, so I find it hard to answer questions about just how fatigued (or whatever symptom) I am. I don't know if that makes sense.
  12. flybro

    flybro Senior Member

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    pluto
    is this a new sysmptom, or just my own personal oddity.

    Sometimes when I'm talking or eating I bite into the inside of my cheek, my lip, and bash my teeth together. I feels like my mouth is unco-ordinated, it's much worse on days that I have a lot of numbnes and pin& needles around my mouth and nose, and in my feet and hands.

    what would this symptom be called, i've started calling it my 'dumb gob moments',:D

    I bet its just me in'it. :rolleyes:
  13. julius

    julius Watchoo lookin' at?

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    I do it all the time flybro. My guess would be neurological, either the signals between the brain and mouth (or whatever part of the body), or just local processing in the brain itself. But either way, neurons not doing what theyre supposed to. I have two nice bite marks right now. one on my lip and one on my cheek.

    Oh, hey, another one....anybody get dry itchy eyes. And even though they feel dry they are really watery.
  14. Countrygirl

    Countrygirl Senior Member

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    .

    I know a number of people in the U.K. whose illness started in Spain or Asia when on holiday, so this may be important.
  15. coxy

    coxy Senior Member

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    yes please, we haven't been tested yet, but with a mother and 2 out of 4 children with ME/CFS that question would be the most important of all!!
  16. flybro

    flybro Senior Member

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    Hey Julius

    I used to have really watery eyes but of late, I get dry itchy eyes, and sticky eyes that cause blurry vision. My eyes water very easily in cold weather, and when I cry. :tear: :D
  17. julius

    julius Watchoo lookin' at?

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    hmmm...anyone else with watery eyes? apart from crying (how the hell can I do the smiley faces?)

    And I really think coxy and kwietsol have a good idea.
  18. shrewsbury

    shrewsbury member

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    Thanks so for the 5th column (ok - no jokes). The 'in the past' column is brilliant!
    I wouldn't paint my livingroom with that colour(I mean get my livingroom painted that colour), but it's not too bad on my eyes.

    What - you mean you want to sleep? To take care of yourself? Atta girl.:Retro smile:

    I often get blurred vision or experience more difficulty seeing if that makes sense when fatigue sets it. My eyelids droop. Fine print becomes more difficult to read. And more so if the light is poor. It's one of my early warning symptoms. It could go in #4 if others get it.

    Absolutely agree - the top looks a bit unbalanced as well. A cheater way of course is explain 100 = no symptoms at and after rest; no symptoms during and after exertion; able to work 100% without difficulty and 0 = the same as Bell's maybe and maybe 50 and leave the rest blank.

    Oops - I just gave away how out of it I've been. I thought nerd had changed from the ultimate insult to the ultimate compliment. Do you mean things have moved on since that? Kim - my intention was reflected in the previous picture I posted, and here's a new one.

    [​IMG]

    Can I borrow that jacket sometime?

    if:Retro smile:
  19. coxy

    coxy Senior Member

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    I have really watery eyes, it was actually one of my first symptoms. Every morning as soon as i woke up they'd start watery as though i was crying. I get a lot of blurring in my eyes aswell. It got so bad i actually went to the opticians and had a full eye test. They said my vision was fine and diagnosed dry eyes. I got a little bottle of special liquid to squeeze into them. To be honest i've never used it, i was just pleased to know it wasn't something more serious!!
  20. Countrygirl

    Countrygirl Senior Member

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    Questionnaire suggestions.

    What a brilliant survey you clever people have created during (my) the night :Sign Good Job:

    I've looked through the questionnaire and just wondered about the following:

    What about asking about the person's job when they became ill: medical, educational, office, homeworker, manual...
    What about qualifications: degree, technical, non-tertiary-level qualifications........ If a high proportion have advanced level qualifications, the governments may be more interested because of the financial ramifications.

    Concerning the sleep question. Could a question be included asking whether the person relies on sleep meds? Without them, I have not been able to sleep at all since the beginning of my illness. To say that I sleep for four hours is therefore a bit misleading as I can't without a lot of meds.

    I am also wondering about the Past question. I know it would make it cumbersome, but it is important I think to find out if the person has improved or deteriorated. Could the Past question relect that? Or maybe just ask add an additional question enquiring whther the current level is worse or better than the past. I have heard that the cognitive disabilities worsen over time, but maybe the physical improve. It would be useful to find this out.

    Being in the U.K.,I have had virtually no M.E. - related tests over 30 years, even though for most of those years I have been bed- or house-bound. It is important to be able to say that there have been no tests. otherwise the results could be scewed.

    Also, the questionnaire asks about what other diagnoses you have received. Well, again there are no tests given. However, - with the help of a friend who is a doctor, and on a purely informal basis, I could tick some of the boxes. But the question says 'diagnosed', which I assume to mean by one's G.P. or consultant - (neither of mine will test me for anything, apart from very basic bloods).....so the truthful answer is no, although I know I have the conditions. Could this be made clearer?

    Would this be a useful time to ask about infectivity? I have a number of questions, which I was going to use for a poll, as Kim knows. I wonder if they could be added, if I write them here.? It would include four extra small boxes. I haven't got time to write them up just at the minute, but could do so later today, if folk think it useful.

    Just a few thoughts......

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