Discussion in 'XMRV Testing, Treatment and Transmission' started by leaves, Jan 14, 2010.
They are all in there. That's one reason it's so long!
Okay, I went through Advocate's BIG list of symptoms and except for the other diagnoses (allergies, prostate cancer, etc), I believe I got most of the other items in. Some seemed redundant and so I didn't duplicate.
We've got lots more stuff to add and a whole bunch of things to clean up/clarify, but this is what we've got so far:
Sample XMRV Positive Survey
Looks great Kim, thank you so much for the hard work!! Kind of funny I think i am the only person here that doesnt have post exertion fatigue that much, but do have the xmrv, weird.Two things that I am missing; skin rashes and hormone imbalances (I myself havent menstruated for many many years)
The only thing is that I cant seem to select multiple symptoms in some categories, for example 1 and 4, am I doing something wrong? Also I think it is better to ask in which country people got sick as opposed to where they live now.
I just took a quick look at the survey. It's starting to look really great. I'm assuming that only one person has answered questions. So on boxes that they check more than one symptom, the response shouldn't be split up by percentage as if there are 3 or 4 people answering- ie 20% for each symptom. Each response, with only one responder, should be 100%. I think that's right??? Right? :worried:
It might be important to state where you were when you got sick. I live in Nicaragua now, but was living in CA, USA when I got sick and am an American.
I think amenorrhea (abnormal suppression or absence of menstruation) should be added. I've heard lots of women with CFS complain about that over the years. And skin rashes. Do you have a name for your skin rashes?
I'm not sure if we're supposed to be able to experiment and try out the choices by clicking on them at this point. Especially if we are not XMRV+.
Kim? If we click now, can it all be set back to zero before we go live? I'll assume so, because I can't get to page 2 unless I complete page 1.
Is there any possibility of adding the option of testing positive through other means of testing? Or would that skew the results, i.e. comparing apples and oranges?
I don't know if I am the only one who has tested positive using Drs. Klinghardt and Cowden's method, but I may be!
I've wondered about that, too. A lot of people say their illness started in a country other than their own.
Okay, I figured out how to give some of the survey questions multiple choice answers.
See what you think. Let me know what I've missed.
The latest and greatest XMRV Positive Survey
ETA: You don't have to answer all of the questions to go to the NEXT page, but try a few to see how the results look
As I update it, I continuously erase all of the test results - so no worries about putting in accurate or complete information. This is only a test survey!
I'd like you to take the survey. At this point in time, we have no idea how accurate ANY of the tests are. If you got a positive result, you're in as far as I'm concerned.
I might be asking a dumb question, but what is Klinghardt and Cowden's method, do they test your blood, how does that work?
I think I described it in a PM response to you: they use direct resonance testing against a sample vial of XMRV. This is not a blood test.
Holy moly Kim - that is a piece of art! I'm so impressed. Thank you.
I hope all sorts of researchers and diagnosticians see this. It could be developed with not much more work into a fantastic diagnostic tool and research tool. I think you should propose it to CFIDS, IACFSME, Mikovits & Klimas maybe to bring to the conference, Jason to do an article and propose it for global usage, anyone educating MD as to diagnosis,................
I bow to the nerd goddess
and on a much smaller scale:
I find that the gap between moderate and severe is huge. Is it possible, desirable to put an in-between category like 'strong'?
and finally - what about internet security. How easy would it be for someone to track how an individual fills in the survey?
Hey Sushi, thanks! But.. what is direct resonance? Sorry to be so clueless
I think this is very important
I think that you should ask that only positive on the VIP culture test fill out the survey(or possibly allow the PCR as well). If we all have learned one thing from this whole ordeal it's that the assay you use is of vital importance. If you want the results of this poll to be of any use you can't just use any method.
Sushi, I don't mean any offence. But the method you mentioned just hasn't come up in any of the discussions by leading professionals in the field. Maybe its a perfectly good method, but it's just such an important variable to control.
I cannot take all of the credit for this. First off, it wasn't my idea (only the survey part). We got fabulous suggestions from everyone on this thread. And Advocate did most of the work compiling all of the symptoms and criteria. I just played programmer and stuck the info in there. But, for my part, you are welcome.
If a bunch of sickies can make a survey like this in a day, then why can't researchers do the same. I'd love it if this became part of the research community's tools to assess us.
What conference are you talking about?
:Retro smile::Retro tongue::victory:
I can change it to a number system (0-5, 0=no symptoms, 5=severe) if you want to be more precise.
The survey maker (me) can print off results that show IP addresses of survey takers. Since I already can see all of your IP addresses, I think it's safe to say that it's safe.
Why can't everyone take it? Just add a question asking whether you tested positive and by which testing method.
I will add another question to the poll about how you were tested. That should cover everyone.
Because the original idea was to look at the results of those who tested positive. We will produce another one for those who tested negative. And sure, we could do a general one as well. But the primary intention behind the creation of this survey was to learn about the symptoms and medical history of those that are XMRV positive.
yeah...didn't think about that.
You can also try a Google Site Search
Separate names with a comma.