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. Countrygirl

    Countrygirl Senior Member

    Messages:
    858
    Likes:
    702
    UK
    Hello Coxy,

    I'm not sure what you are asking. If the age of the child is entered and the length of time they have been ill.....that's .....somewhere in the questionnaire, the situation is self-evident.

    Some children manage to carry on, with support, and manage to complete their exams, but some don't.

    Is there something you would like to add to the question. I'm sure it can be improved.

    Best wishes,

    C.G.
     
  2. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Hi Coxy,

    Your question made me think of another. Maybe we should ask people to indicate if they are completing the survey for themselves or for a child or dependent or someone who is unable to do so without assistance.
     
  3. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Question for Kim

    Hi Kim,

    Is there an easy way to transfer the survey to Word so that it shows up in a plain black font on white background? I'd like to print out what we have so far and have it in front of me.

    I have copied the pages to Word, but it looks just like it does on the survey website--not very useable for my purposes.
     
  4. Where do we fill in the information please?
     
  5. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Hi Dys,

    There's a practice survey up here. We, as a group, are still in the process of developing the survey. So take a look at it, and come back with your suggestions.

    Your responses on the survey form will be wiped out after you look at it.

    In case you don't want to read the whole string, I think the latest consensus is that we will use the same form to survey three different groups of people: people who are XMRV-positive; people who are XMRV-negative; and people who have not been tested.
     
  6. _Kim_

    _Kim_ Guest

    Sorry Advocate, there is not a way to transfer it to Word except for the copy method you've tried.
     
  7. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    There have been a few questions about timeline and a few other things that are good ideas, but apparently too difficult to fit into this poll. How about if we do this one as sort of a preliminary study....just get a feel for waht the commonalities are between XMRV+'s. Once we have the results for this one, we could use those in a second poll and dig deepr into things like disease progression etc.
     
  8. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Kim! I'm glad you are back! I was trying to be helpful by entering Rheumatoid arthritis in #17 (countrygirl, #197), but it ended up in the wrong spot, and now I've made more work for you. Sorry! (When I get time I'll set up a practice document of my own and fool around with it and learn how to do it right.)

    I couldn't read the black print on the dark gray, so I changed the background temporarily to neutral, and will copy and print from that before changing it back.

    I've re-read the entire list and copied people's suggestions into a long Word document that I can go through to see if we've covered everything so far.
     
  9. Cloud

    Cloud Guest

    Just took the practice survey......Fantastic job!! I would agree to go with it for a practice run. It can be tweaked more later?
     
  10. _Kim_

    _Kim_ Guest

    Oh good, you were able to get in. I know we've missed some stuff along the way. That's great that you'll comb the list for that.

    No worries about #17. I'll check it out later. But don't let that stop you from trying to make changes/additions. I messed it up plenty along the way, figuring out how this software works.
     
  11. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Hi Julius,

    Yes, I agree that some of the good ideas that have been suggested are too difficult to fit into this poll, even with Kims heroic efforts.

    When we started out, thats exactly what I wanted. I would have been happy with a short and simple survey, just get a feel for what the commonalities are between XMRV+'s.

    But then Kim came up with a ready-made survey form, and people started making really good suggestions about what could be added, and Kim didnt mess around; she just did the work.

    At first, I questioned whether we should be adding symptoms without discussing them first--especially since the survey was getting so long. Then I realized that people might have been scoffed at for years when they mentioned these symptoms to their doctors, and the symptoms might turn out to be important. So I did an about face, thinking that if someone has a lavender nose, and wants it on the symptom list, then lavender nose should go on the symptom list.

    Then someone suggested that if we can manage to get a really good, comprehensive survey, it could be very helpful, not only to us, but to clinicians and researchers. Really? Would that be possible? Or am I delusional?

    This idea--that it might be possible--was reinforced when someone else, cfs since 1998, offered to do the statistical work.

    Now someone else on this forum has put me in touch with a person whose career has included reviewing studies for medical and educational journals, for relevance and accuracy in their statistical measuring. Im asking this person to take a look at what we have so far, and I hope we can be patient a little longer, and wait to see what advice this person gives us.

    Meanwhile, where do we stop? I personally don't want to stop until I've had a chance to run it by three people I know who are between 0 and 10 on the Bell scale--people who don't usually post because they are too sick and exhausted--but who have very clear minds.

    Again, Im hoping we can be patient a little longer. Weve all taken surveys we thought were not very good. It will be an amazing accomplishment if this ad hoc group can come up with something really good.

    On the other hand, I do see your point. If I'm in the minority, I'll be happy with whatever survey I can get.
     
  12. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Hi Advocate,

    I guess I did call earlier to get this put up...sorry, wont do it again.

    But my last post wasn't so much trying to hurry things up. I totally agree that
    the info gathered on this poll could be very useful to both docs and researchers, as well as patients. That's why I'm excited by it.
    But I do think it might be a good idea to do two phases.

    The first phase is aimed at identifying commonalities. And yes, I agree that it should be as comprehensive as possible,
    and take as long as it needs to take. But when it does get to the point that it looks close to being finished (you and Kim could decide when that point is)
    we could then put it to a vote. That way the final decision is done as a group, to continue in the spirit that it was put together.

    But then, with the second phase we could really home in on what we discovered in the first phase and get a real clear picture of what each of those symptoms looks like, and how they interact with each other. We could use the information we gather in phase 1 to help us generate some of the questions
    for phase two. I have a feeling phase 1 will turn up a few surprises, and lead to questions we might not have thought of otherwise.


    Also, in an earlier post I mentioned adding a section to this poll that would ask ppl to list any treatments they have found useful. I thnik that could
    really help to shed light on possible avenues of treatment.

    Thank you guys for your excellent work. I am amazed that we live in an age that without financial recources, we can put together something like this and
    get it out to potentially millions of people.

    Power to the people...lol

    ps. sorry about the formatting, I wrote this in notepad and pasted it
     
  13. hensue

    hensue Senior Member

    Messages:
    269
    Likes:
    1
    Advocate I think it is awesome you could find someone in the field of reviewing medical studies. Would it not be prudent to have it as accurate as we can get the survey for any researcher, doc or whomever.

    Here is my problem we all want to look at a survey that long because all of us need help. Will others go through the many pages?

    Just a thought
     
  14. _Kim_

    _Kim_ Guest

    With this one, I have it set so that you can go back at a later time and edit your results. You could do a few questions a day.
     
  15. _Kim_

    _Kim_ Guest

    This survey needs a little more time before it is done. I would guess that by the end of the weekend, Advocate and I can get in all of the lavender nose symptoms that we might have missed.

    At that point, I see no problem with posting it up here. I'm curious what the results will show, even with our small XMRV+ population. I know I'm not the only one who would like to know.

    If we put it up soon, just know that you'll have to take the whole thing again when CFS_Since puts it up on this server.

    I see no reason why, if we do this correctly, that we couldn't write up a nice little science article with the results of our in-house survey. Do journals have a limit is on the number of authors per submission?
     
  16. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Okay. It sounds as though this would mean going back to a simpler form.

    We have a good basis for a longer, more comprehensive form with what we've done so far. I'm beginning to think you are right. We should get something fairly short and simple up as quickly as we can. Phase 1.

    That sounds good to me.

    I think you are right.

    I'm hoping for surprises!

    I'd prefer to delay treatment questions to Phase 2.

    Wouldn't that be great!

    That's what I like about this forum.
     
  17. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Hi Kim,

    At the bottom of your posts you have the words that begin with "Do not utter words that can create discord..."

    At the bottom of my own posts I'd like to add the URL for the survey. Can you tell me where I can find out how to do it?

    Oh, and what you told Hensue about being able to complete the survey over a period of time...very interesting. We probably need an opening graph--or some sort of preface that mentions, among other things:

    How many questions or pages there are
    The survey can be completed over a period of time
    It can be edited even after it's completed and registered (is that the word?)
    Privacy statement

    Another thought: it would be helpful (for the researchers and journalists who are going to be beating a path to the results, smiley face) if we asked people what year they were born. Would a drop-down list of years be the way to do it?

    So far I've succeeded in putting the first six sections into Word, black and white. It takes 6 pages in 14 point! I'll continue tomorrow. It really helps me to get a better idea of what we've got if I see it on paper.
     
  18. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    I'd like to edit what I just posted, but either the Edit button is gone or I've forgotten where to find it. Bedtime.
     
  19. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Thanks again Advocate,

    I just want to clear up one point. Maybe I am not explaining myself very well. I'm not suggesting we change the way we are making the current poll, ie making it shorter. It seems to be shaping up very nicely. I think it's good to make it a sort of kitchen sink and get absolutely everything in there.

    I think I'm really just suggesting that we continue afterward with a 2nd phase. Which it sounds like you are agreeing with.

    Basically what i am picturing (and correct me if I'm getting it wrong) is that the results of the poll (phase 1) will show that, say, 90% of XMRV+ have cold extremities and only 10% have itchy eyes.
    In that case a 2nd phase of the poll could go really in depth into cold extremities, but not bother with itchy eyes.

    So, put everything we can think of into Phase 1. Then any symptom that shows up, say, >75% in XMRV+ would be considered a symptom, and therefore worth looking more closely at.

    Phase 1- long and comprehensive
    Phase 2- shorter, more indepth

    It's totally possible that I'm misunderstanding something, so like I said, please set me straight if I am.

    If anyone else has any thoughts on this feel free.

    G'night Advocate
     
  20. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Kim,

    That would be really cool to publish this. I think one problem would be that we have no way of validating that only XMRV+'s are responding.
    Personally, I trust the people on this forum...but I don't think trust would really be good enough for a proper publication.

    Off the top of my head I can't really think of a way to filter the responders thoroughly enough. Especially since most people would want to be anonymous. Or...then again...maybe people wouldn't mind giving their names.
    Any thoughts?
     

See more popular forum discussions.

Share This Page