XMRV Positive? What are your symptoms/medical history?

[Hysterical Woman]

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?

islandfinn

What she said!

 

[_Kim_]

So the owner of the suvey does not have more detailed results than that? I think it is important to know how the answers relate to each other rather than just knowing X% answered one way and X% answered another way. I suggest we host a survey directly on this site. I mentioned this earlier but you might not have seen my post. I can write a custom PHP script (or customize an existing one) that Cort could put up on the server, that way people won't have to leave the site to take the survey and we have better data access. Since I studied statistics extensively in college I know the best way to collect the data as well as how to analyze it.

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?

 

[_Kim_]

Who put the loud belly sounds? Gurgling in stomach cannot even sleep? Could not believe that was on there I thought I was the only one who did that.

I DID!!! As I was typing into the program, my belly was making quite a ruckus and so I added it in.

 

[Alexia]

Sorry if my brain fog is playing tricks today but where is this survey?

 

[_Kim_]

Sorry if my brain fog is playing tricks today but where is this survey?

Here's the rough draft survey

 

[Katie]

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.

 

[joyscobby]

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.

 

[Katie]

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.

 

[Alexia]

Thanks Kim, it looks great!

 

[_Kim_]

New allergies (not just to foods), incl. mold allergies, perhaps whether any of those have been verified by testing, and perhaps whether those worsen at least some of the other ME/CFS symptoms.

New question #10 - please take a look and see if this is what you were asking for.

Under GI stuff: Acid reflux, abdominal discomfort (not just pain or bloating)

Added to GI list.

Under pathogen tests, maybe a question at the end as to whether you have been tested at all. I think that's important since many people, esp. but not exclusively in the UK, have never been tested for anything except maybe EBV. Otherwise I don't know how we would tell accurately what percentages had "co-factors".

Done.

 

[_Kim_]

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.

Raynaud's is also known as the red, white, and blue disorder.

If you have primary or secondary Raynaud's, cold temperatures or stressful emotions can trigger “Raynaud's attacks.” During an attack, little or no blood flows to affected body parts. As a result, the skin may turn white and then blue for a short time. As blood flow returns, the affected areas may turn red and may throb, tingle, burn, or feel numb.

 

[hensue]

You are correct about Raynauds I have the blue sometime. Kim do you ever sleep???

Wow

 

[_Kim_]

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.

I'm not sure on this one - anyone else have an opinion?

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

All these were added.

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.

Raynaud's was already on the list of diagnoses #15.

 

[Katie]

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.

 

[_Kim_]

Kim,

for section 2;

'fast paced tasks' and 'situations of overload' seem like cognitive to me

Moved to Cognitive question #3

 

[_Kim_]

I think we (the royal we you notice) should add gall bladder and pancreas problems as many people report them - not sure about kidney.

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?

did you have migratory pain, even from muscles to joints?

Added it to the pain section

 

[joyscobby]

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.

 

[kwietsol]

How about adding a question about first degree relatives (husband, parent, child, siblings) with CFS? And perhaps also with prostate cancer, autism, atypical MS, fibromyalgia, lymphoma, leukemia? If we get a number of hits on these diseases, we might attract the interest of additional researchers.

(Sorry for the self-quote. I'm acting like Wessely. )

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:

http://www.informaworld.com/smpp/con...l~jumptype=rss

"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."

 

[_Kim_]

Kim -- Great survey. Thank you.

How about adding a question about first degree relatives (husband, parent, child, siblings) with CFS? And perhaps also with prostate cancer, autism, atypical MS, fibromyalgia, lymphoma, leukemia? If we get a number of hits on these diseases, we might attract the interest of additional researchers.

I added question #23. Please see if this what you had in mind.

 

[_Kim_]

"Worsening of symptoms under increased stress (physical or emotional)" - maybe separate this into two questions? Might be interesting to see if there's a noticeable difference... Btw, what are we defining as physical stress - exertion again?

"Worsening of symptoms after an additional/ transient infection (cold, flu, or other)?"

"Inability to exercise (aerobically or anaerobically)"?

For #5 (post-exertional symptoms):

-Severe exacerbation of most or all ME/CFS symptoms
-Feeling extremely ill or 'toxic' (not just fluey; I've heard people use the term 'poisoned' a lot).

I've added these. But I don't know how to phrase this into a good question. :Sign Help:

"Longest exacerbation in response to a trigger"