OK, I haven't gone through this whole thread but whatever symptoms you include on the list, please include those stated in the Canadian Consensus Criteria.
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Hi Hope,
They are all in there. That's one reason it's so long!
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OK, I haven't gone through this whole thread but whatever symptoms you include on the list, please include those stated in the Canadian Consensus Criteria.
:
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.
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.
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!
Sushi
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!
Hi Leaves,
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.
Sushi
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.Holy moly Kim - that is a piece of art! I'm so impressed. Thank you.
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.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,................
:Retro smile::Retro tongue::victory:I bow to the nerd goddess
I can change it to a number system (0-5, 0=no symptoms, 5=severe) if you want to be more precise.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'?
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.and finally - what about internet security. How easy would it be for someone to track how an individual fills in the survey?
islandfinn
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.
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.
Why can't everyone take it? Just add a question asking whether you tested positive and by which testing method.