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I dont really know the trigger, please make that anoption too. Also i have appetite distubances; sometimes i amjust hungry all The time....
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I think we need to ask age of onset or the answers to the educational level question could be misleading
Question about educational level:
At what age did you become ill?
What is your level of educational attainment: (1) GCSE (U.S. equivalent) (2) A level (U.S equivalent (3) degree (4) post-graduate degree.
Oh and I have a suggestion for a symptom question. We should ask about crimson crescents:
http://www.immunesupport.com/93sum007.htm
Any thoughts? Can we ask about this?
Absolutely!! I just haven't put in any of the suggestions that have been made since - maybe Thursday. I should have time tomorrow to get to everyone's suggestions into the survey.
Any thoughts? Can we ask about this?
Someone also requested Rh-negative inclusion.I do hope we can include blood type as a test and which time, A positive, A negative, B, or O. (Do I have those four blood types right?)
Hi Folks:
When I took the "test" survey I accidentally clicked "postive" for XMRV and then I couldn't unclick it to fix the error. So hope that's a fixable situation.
Also, I do hope we can include blood type as a test and which time, A positive, A negative, B, or O. (Do I have those four blood types right?)
This is such an amazing forum! ~FernRhizome
I have no idea if this symptom is shared by anyone else, but thought I'd throw it out there in case it was something anyone thought it should be added to the survey...
What about the pads of your fingers being permanently wrinkled or "pruned", similar to what happens when you stay in a bath for too long only it is not transient? I've seen enough elderly hands to know it normally starts to happen after a certain age, but as a 20-year-old I can't classify this symptom as normal aging. It's been a couple years with it, now, and shows no signs of going away. A minor detail, of course, but just in case some people share the same symptom...
Edit: I haven't been tested for XMRV...I may have misunderstood this thread. Reading it over I thought everyone was offering suggestions, but now I'm not so sure. Oh well...it's the brain fog talking...
Are we all supposed to be taking the survey then, i thought it was for XMRV+ only+?
My understanding is that we can all take the survey now because it doesn't count. The main purpose of taking it now would be to see it and then come back to this list and offer suggestions for improvement.
It's not "live," as Kim put it. At first it was not registering any votes, but she might have changed it so that it registers votes--or at least write-in notations of symptoms.
Kim, can you clarify?
At first, the consensus seemed to be that we wanted to find out what symptoms and medical history the xmrv+s have in common.
Then, I believe that most people thought it would be good to try to find out what differences exist between xmrv+s and xmrv-s. This would restrict the survey to people who have been tested.
Finally, someone suggested that there be some mechanism whereby others take it, too--people who have not been tested.
My personal interest is in people who have been tested. But I think we do need a wider group to help construct the survey. For one thing, a lot of people who have not been tested are planning or hoping to be tested in the future.
The following options control how participants take the survey:
Kwik Surveys places a cookie on the computer that the survey has been taken on
- Take survey once
- Take survey once and return to edit survey
- Take survey many times
The above options will only work if cookies are enabled and the same computer is used.
In fact, I was thinking last night that a question about Ehlers-Danlos might be good.
Sushi