Discussion in 'XMRV Testing, Treatment and Transmission' started by leaves, Jan 14, 2010.
What she said!
Okay, cfs since 1998, you're on!!
I think having the test survey up there now is a good way to let us review and tweak the wording and the questions. When we're done, we'll hand it over to you. Does this sound reasonable?
I DID!!! As I was typing into the program, my belly was making quite a ruckus and so I added it in.
Sorry if my brain fog is playing tricks today but where is this survey?
Here's the rough draft survey
Here's a little critique with my thoughts.
Section 3 - I was interested to see dyslexia as a symptom as I thought of it as something independent of ME. If it is indeed a symptom it might be helpful to separate dyslexics into pre-ME dyslexia and post-ME dyslexia.
Section 12 about pathogens, rather than yes or no it would be more helpful to have it as - postive, negative, not tested. I have not been tested for any of them so it would be misleading to show up as if I was negative.
Section 13 also requires a not tested option.
I'm not sure on option 22, I was of school age so I was 'working' in a school. Don't remove it, but the options seem a little out of left field.
Section 24 should say working or studying for us youngsters This poll should keep childhood or university age MEers in mind
And one more weird symptom I get that I'm not sure if I saw listed is occasional blue feet and hands. I don't know if it has a name but sometimes my body sends all my blood to my vital organs and I get dusky blue feet and fingers, sometimes up my legs a bit too. If anyone knows what that's called I be grateful!
Hope that helps.
Katie is the blue hands feet not Rynards (in Canadian)
Agree with dyslexia as I have always been since birth but it is worse now because of cognetive problems. Lost where the pool draft is so maybe someone can add it soon to make it easier to find.
Reynauds is usually white hands and feet I think, I know someone with it. I sometimes get something like it in my little fingers but I put it down to poor circulation rather than a proper syndrome. I went a saw a nurse practitioner about it, he said it was was my body responding to heat change (the worst time was getting out the shower) and that my body redirected blood to the vital organs in response. I wondered if it had something to do with low blood volume maybe? I've not been tested for that either but frankly I've been quite happy not being messed about with.
Thanks Kim, it looks great!
New question #10 - please take a look and see if this is what you were asking for.
Added to GI list.
Raynaud's is also known as the red, white, and blue disorder.
You are correct about Raynauds I have the blue sometime. Kim do you ever sleep???
I'm not sure on this one - anyone else have an opinion?
All these were added.
Raynaud's was already on the list of diagnoses #15.
I've got to get my day started now but I'll start a thread on this elsewhere, see what the benefits of persuing it might be. I don't think anything can be done for it but it would be nice to know something about my body than to get brushed off my a nurse practitioner commenting on my 'anxious heartrate'. I've never felt as small in my life than when I go into my surgery.
This survey is really shaping up nicely, Kim you're a true asset to Pheonix.
Moved to Cognitive question #3
I'm not sure where to add these or how to describe them. Would they fit in with "other diagnoses - question #15? And what if someone had their gallbladder (or spleen) removed?
Added it to the pain section
The pre ME dyslexia thing might be significant.
I have had a lot of experience of the issues of dyslexia because of my sons learning difficulties and it seems to have connections to Autism as well. My son has some of the ME symptoms but not all of them. There is also a genetic connection as it runs in families, mines and others i know are riddled with it.
A lose friend who also has ME has a son who is similar to mine.
I was deffinetly dyslexic pre ME but it may have been a precursor.
It may have a significance it may not if we poll we may know.
(Sorry for the self-quote. I'm acting like Wessely. :ashamed: )
Let me make another plea for inclusion of close relatives. I know of a mother/son, both XMRV positive, both with CFS. The mother's brother-in-law died recently of aggressive prostate cancer. I also know of a case that is likely wife/husband XMRV transmission. While none of us want XMRV to be either hereditary or transmittable between relatives, it may be the factor that explains the results of the New Jersey study below.
If you included this item, we could be the first ones out with quantitative data on this particular XMRV danger. I think we could do something with that to get the attention of the scientific community.
New Jersey study:
"The prevalence of CFS was higher in genetically unrelated household contacts and in nonresident genetic relatives than in the community, indicating that both household contact and genetic relationship are risk factors for CFS."
I added question #23. Please see if this what you had in mind.
I've added these. But I don't know how to phrase this into a good question. :Sign Help:
You can also try a Google Site Search
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