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XMRV Positive? What are your symptoms/medical history?

K

_Kim_

Guest
Oh, I forgot to mention that the first question (which is soon to become #2 after I add the testing questino) is where I put all of the symptoms that didn't fit clearly into other categories. Suggestions on where to move them would be great.

Okay, the test question is in.

Here's the Updated Survey
 

Dr. Yes

Shame on You
Messages
868
Hey Kim,

Just had a look at the New and Improved Survey -- Very cool! (If a bit hard on the eyes..I thought one of the questions for the visual section should be "Is reading this hurting your brain?" :D)

A couple things that I think should be in there (did you already mention this?..): 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.

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

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".

(Btw, I've always had a problem with the activity scales, even the Bell scale, for the bottom end of the activity spectrum. Seems like there should be one more category between the lowest and second lowest, i.e. not entirely bedridden but still unable to take care of self in most respects. Minor point, I guess..)
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
Kim,

for section 2;

'fast paced tasks' and 'situations of overload' seem like cognitive to me
the rest looks possibly endocrine except hives and rashes. But maybe a sort of miscellaneous section would be good. Because no one really knows how any part of the disease really works, it's hard to know what's actually causing each symptom.

I hope I'm being helpful here and not just getting in the way. This is just such a cool thing I'm getting a bit excited.
 

Lily

*Believe*
Messages
677
Under GI stuff: Acid reflux, abdominal discomfort (not just pain or bloating)

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".

(Btw, I've always had a problem with the activity scales, even the Bell scale, for the bottom end of the activity spectrum. Seems like there should be one more category between the lowest and second lowest, i.e. not entirely bedridden but still unable to take care of self in most respects. Minor point, I guess..)

Definitely agree, and especially about the Bell scale, FWIW:Retro smile:
 
K

_Kim_

Guest
Hey Kim,

Just had a look at the New and Improved Survey -- Very cool! (If a bit hard on the eyes..I thought one of the questions for the visual section should be "Is reading this hurting your brain?" :D)
There are several styles that can be selected. I just changed it to a darker grey one. Is this any better?

A couple things that I think should be in there (did you already mention this?..): 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.

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

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".

(Btw, I've always had a problem with the activity scales, even the Bell scale, for the bottom end of the activity spectrum. Seems like there should be one more category between the lowest and second lowest, i.e. not entirely bedridden but still unable to take care of self in most respects. Minor point, I guess..)

All good suggestions. I'll add them tomorrow, including another rating for the Disability Scale: - a 5 for: I am virtually bedridden, but can still wipe my own butt :eek:. Seriously, if you come up with a description for a level 5, I'll add it in.
 
K

_Kim_

Guest
Kim,

for section 2;

'fast paced tasks' and 'situations of overload' seem like cognitive to me
the rest looks possibly endocrine except hives and rashes. But maybe a sort of miscellaneous section would be good. Because no one really knows how any part of the disease really works, it's hard to know what's actually causing each symptom.

I hope I'm being helpful here and not just getting in the way. This is just such a cool thing I'm getting a bit excited.

No julius, you are hardly getting in the way. This is exactly the kind of feedback we need to get it in good shape. And this is collective creating at its best. Plus, Advocate made me promise that we wouldn't release it LIVE until it was perfect!!

I just grabbed symptoms and threw them into categories. What the heck do I know?
 

leelaplay

member
Messages
1,576
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.

It slowly percolated through my brain that I hadn't expressed this, I came back to do so, and voila! You had done it for me. Ta

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 know. But we're becoming an educated bunch of sickies. With all the info and expertise we bring together, my guess is that this survey is the most up-to-date piece of literature and compiles all know research and diagnostic tools. There aren't that many specialists out there that know as much as our combined super-network brain. Hopefully xmrv will change that and this will be common knowledge soon.

What conference are you talking about?

Oh - sorry - it's so filling my mind that I project that everyone already knows - the up-coming Invest in ME May 12 2010 conference "'A New Era in ME/CFS Research" with

Mikovits, Kerr, Klimas, Cheney, Chia, Huber.......

and a focus on educating healthcare providers

I can change it to a number system (0-5, 0=no symptoms, 5=severe) if you want to be more precise.

I would appreciate that.

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.

I didn't mean you silly - I meant someone from the outside.

----------

I am completely behind having 3 surveys
a) WPI- approved testing - tested positive
b) WPI-approved testing - tested negative
c) not tested yet (think it would be good for people with results pending to hold off until the results are known)

and if there a a number of people who have been tested by non-WPI approved testing, then we could add 2 more to cover those results.
 

leelaplay

member
Messages
1,576
I went over the current version - looking great!

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

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

And - agree that the bottom end of the Bell scale is off. From 30 down it doesn't make sense to me or reflect the stages and (in)capabilities I've had.

And I am serious about flogging it once we're done - so let's start thinking of who would be best to bring it to the world.

if:)
 
Messages
40
First degree relatives

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.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi Leaves,

Here is a description:

Direct Resonance Testing (excerpted from another practitioner's description of Klinghardt's A.R.T.) http://www.naturalworldhealing.com/integrated-biological-evaluation.htm#DRT

Another vital piece of the puzzle is provided by direct resonance testing. [This has been extensively researched in the U.S. and Japan, as a result of the labors of Yoshiaki Omura, M.D., of New York City -- http://www.icaet.org/symposium.html and http://www.baobab.or.jp/~oring/e_basis.shtml.] The Biological Law of Identical Substances states, If there is an identical substance outside the body as there is inside the body, a stress reaction in a muscle is created. When samples of various organisms are placed directly over areas in the head, face, jaw, TMJ, or other body parts, and if that organism is present in any of those areas, a muscle is weakened. The presence of intracellular organisms that are hidden from most tests are thus revealed and a treatment is also revealed in the same manner.
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
I just noticed theres no endocrine section. Endocrine dysfunction is one of the main canadian consensus criteria. Cortisol(hypo) is a well documented one. Testosterone, estrogen.
 

Dr. Yes

Shame on You
Messages
868
OK, checked out the new gray color and it's too dark... I know, whine whine whine... :ashamed:

I agree with Julius that since we don't know the cause of some of these symptoms (and since things like dizziness can be caused by a number of systems) it's good to leave #2 nonspecific.

"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?

A few more potential addtitions to bother you with: :Retro tongue:

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

Along with the one already in there about longest remission, what about:
"Longest exacerbation in response to a trigger"

"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).


What do y'all think?

By the way, Kim is so not a Nerd. More like a Techno-Ninja.

Or a Secret Agent Girl:

00smiley.gif



(uhh.. that's not too easy on the eyes either, is it?)
 
K

_Kim_

Guest
I went over the current version - looking great!

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

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

And - agree that the bottom end of the Bell scale is off. From 30 down it doesn't make sense to me or reflect the stages and (in)capabilities I've had.

And I am serious about flogging it once we're done - so let's start thinking of who would be best to bring it to the world.

if:)

I went in and changed the color again (I decided the grey was too dark). And I also added the 0-5 scales plus a 6th category for [Past] symptoms.

I haven't added or moved any of the symptoms that have just been mentioned, but I'll get that stuff in tomorrow.

I also think we should rewrite the Disability Scale completely (or at least the lowest scoring categories).

ETA: I am going to change the color one more time. It shows up differently when it's published than what I see as I'm editing it. I think I found a medium tone that might work. Here's the latest
 
K

_Kim_

Guest
I just noticed theres no endocrine section. Endocrine dysfunction is one of the main canadian consensus criteria. Cortisol(hypo) is a well documented one. Testosterone, estrogen.

Keep 'em coming julius. Could you put those into question format for me, so that I can plug it right in? I'm not too familiar with the endocrine dysfunction symptoms.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Kim, Advocate and the Super-Wonderful Team!

It's looking really good!

Just wondered, libido anyone?:Retro redface:

Sushi
 
K

_Kim_

Guest
OK, checked out the new gray color and it's too dark... I know, whine whine whine... :ashamed:
I'm not sure about the new color, either. It's called Sand, but it looks more like puke. Easier on the eyes, I think though.

I agree with Julius that since we don't know the cause of some of these symptoms (and since things like dizziness can be caused by a number of systems) it's good to leave #2 nonspecific.

"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...
Got it.

Btw, what are we defining as physical stress - exertion again?
Wanna try and craft better wording for this?

A few more potential addtitions to bother you with: :Retro tongue:

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

Along with the one already in there about longest remission, what about:
"Longest exacerbation in response to a trigger"

"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).
Noted. These will be added.

By the way, Kim is so not a Nerd. More like a Techno-Ninja. Or a Secret Agent Girl:

Koan calls me the Secret Weapon
 

Lily

*Believe*
Messages
677
Kim, Advocate and the Super-Wonderful Team!

It's looking really good!

Just wondered, libido anyone?:Retro redface:

Sushi

That's a good question Sushi - a vague vague memory..............:sad::tear:
 

Lily

*Believe*
Messages
677
I was thinking ED as well. Some of our fellas might have the want but not the means.

Sure, also sometimes you have libido and things are working, but just can't quite get there, ya know? Seems to be a common complaint as well. Gosh maybe we should reverse this questionnarie and just see what works. Do we have any parts that work right?:confused: