XMRV Positive? What are your symptoms/medical history?

Sushi

Moderation Resource Albuquerque
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Here is another thought: could we differentiate different phases of our illness? I have had very severe and debilitating symptoms in the past, but I am getting better. So a survey of "present" symptoms, would not reflect my disease history.

Sushi
 

Advocate

Senior Member
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I found a free survey maker. I made a quick survey to see if this system will meet our needs. What do you think? It has unlimited questions, so we can make it as long/short as we like.

Symptomometer Survey
Hi Kim,

I like the survey--especially because there can be so many choices under a question.
I also love Dr. Bell's disability scale, but can we please use the unabbreviated version? I think the detail included in the original helps people make more accurate self-assessments.



This scale is from ‘The Doctor’s Guide to Chronic Fatigue Syndrome’, by David S Bell, pages 122-123.

Copyright in the following excerpts remains with David S Bell, MD.

The attempt is to document as accurately as possible the severity of symptoms, the degree of activity impairment with both activity and rest, and the functional ability regarding full-time work … This disability rating scale has been developed in our office and any physician wishing to use it may feel free to do so.

100
No symptoms at rest. No symptoms with exercise; normal overall activity level; able to work full-time without difficulty.
90
No symptoms at rest; mild symptoms with activity; normal overall activity level; able to work full-time without difficulty.
80
Mild symptoms at rest, symptoms worsened by exertion; minimal activity restriction noted for activities requiring exertion only; able to work full-time with difficulty in jobs requiring exertion.
70
Mild symptoms at rest; some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work full-time with difficulty.
60
Mild to moderate symptoms at rest; daily activity limitation clearly noted. Overall functioning 70%-90%. Unable to work full-time in jobs requiring physical labor, but able to work full-time in light activities if hours flexible.
50
Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or desk work 4-5 hours a day, but requires rest periods.
40
Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 50%-70% of expected. Not confined to house. Unable to perform strenuous duties; able to perform light duty or desk work 3-4 hours a day, but requires rest periods.
30
Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform desk work 2-3 hours a day, but requires rest periods.
20
Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 30%-50% of expected. Unable to leave house except rarely; confined to bed most of day; unable to concentrate for more than 1 hour a day.
10
Severe symptoms at rest; bedridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.
0
Severe symptoms on a continuous basis; bedridden constantly; unable to care for self.

Survey Results
http://notdoneliving.net/foothold/scales/david-bell

Somehow, I've lost the ability to preview my posts. Does Preview work only with Reply to String, not Quick Reply?
 
K

Katie

Guest
Here is another thought: could we differentiate different phases of our illness? I have had very severe and debilitating symptoms in the past, but I am getting better. So a survey of "present" symptoms, would not reflect my disease history.

Sushi
I concur with this, could their be two lists - past symptoms (no longer occuring) and present symptoms?

If we're getting super complex, some symptoms I have curreently but are only active at certain times, we could have multiple tick boxes next to each symptom regarding whether you experience a symptom rarely, frequently or constantly.
 

Countrygirl

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Here is another thought: could we differentiate different phases of our illness? I have had very severe and debilitating symptoms in the past, but I am getting better. So a survey of "present" symptoms, would not reflect my disease history.
I agree, Sushi. In the first 15 years or so of my illness I had frequent bouts of flu-like symptoms, swollen glands, sore throat, mild fevers, but my symptoms have changed in recent years.( Personally, I find Dr Cheney's description of the evolution of the symptoms through different stages of the illness to be relevant to me.) So, I would have a problem with filling in a survey that asked me if I had flu-like symptoms, because I did for many years, but don't now. I do now have breathlessness, nausea and others which I didn't in the early stages. Cognitive problems worsen I find - unless aging is entering the equation. I think we do need to differentuate between the different stages of the condition for those of us who have it for decades. It may make it too combersome though. Perhaps, initially, we need to just list all the major symptoms that we have ever experienced and then investigate the symptoms that are associated with different stages.
 
K

_Kim_

Guest
It would be easy to have two sets of questions - one for current symptoms, one for a history of symptoms. I think breaking it up into separate categories will make this a little less monstrous.

For example, the categories could be:

  • cognitive symptoms
  • pain symptoms
  • neurological symptoms
  • Autonomic Dysfunction symptoms
  • Fatigue Symptoms
  • Sleep symptoms
  • PEM symptoms
Also, a category for demographics:

  • Male/Female
  • Age
  • Location
  • Years of illness
 

Kati

Patient in training
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I am not sure if I am positive, but I agree with country girl- some of my symptoms are cycling- joint pain come and go, severe headache come and go, orthostatic intolerance is faily constant, sore throat varies, shortness of breath comes and goes... Etc... I don't know how we can all compile that for it to make sense.
 
K

_Kim_

Guest
Hi Kim,

I like the survey--especially because there can be so many choices under a question.
I also love Dr. Bell's disability scale, but can we please use the unabbreviated version? I think the detail included in the original helps people make more accurate self-assessments.
If we use the full unabreviated versions, the text just runs horizontally and you have to scroll too much to read it. The way to do this is to put the whole text in the question. Like this.
 

Advocate

Senior Member
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I used Advocate's list of Hensue's symptoms to make a sample survey.

Check it out here
Hi Kim,

That's very attractive!

How many symptoms do you think should be in a poll?

I have 98 symptoms so far on my master symptom list, almost all taken from suggestions in this string. If we winnow it down too much, we might miss some unusual symptom that is prevalent in xmrv+ people. If we make it too long, people might be discouraged--though it helps that the form is so attractive and easy to use.

Is it hard to add to or subtract from a poll once it's up?

My own feeling is that we should tinker with the list of possible symptoms for quite a while before putting up a poll that anyone can use. I think we should take the time to get it right.
 
K

_Kim_

Guest
Hi Kim,

That's very attractive!

How many symptoms do you think should be in a poll?

I have 98 symptoms so far on my master symptom list, almost all taken from suggestions in this string. If we winnow it down too much, we might miss some unusual symptom that is prevalent in xmrv+ people. If we make it too long, people might be discouraged--though it helps that the form is so attractive and easy to use.

Is it hard to add to or subtract from a poll once it's up?

My own feeling is that we should tinker with the list of possible symptoms for quite a while before putting up a poll that anyone can use. I think we should take the time to get it right.
If we break those 98 symptoms up into the categories (as one question each), we should have no problem getting everything in.

Yup, we'll keep editing it until we have a complete list. It's a very easy program to use. I agree, we'll polish it up until it looks right - then put it out there.
 

Advocate

Senior Member
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I am not sure if I am positive, but I agree with country girl- some of my symptoms are cycling- joint pain come and go, severe headache come and go, orthostatic intolerance is faily constant, sore throat varies, shortness of breath comes and goes... Etc... I don't know how we can all compile that for it to make sense.
I don't know, either. Maybe we could specify "current" symptoms in a vague sort of way. Or ask, "Do you sometimes have these symptoms?" Or maybe the poll could be done in two columns: "Sometimes" and "Always" or "Usually" or "Frequently."

Kim, are parallel vertical columns an option?
 
K

_Kim_

Guest
Is it hard to add to or subtract from a poll once it's up?
If we change the poll once it is published, it will erase all of the previous results. So, we can edit and edit again, until it looks right. Once we GO LIVE (hehe), we should leave it alone.
 
K

_Kim_

Guest
I don't know, either. Maybe we could specify "current" symptoms in a vague sort of way. Or ask, "Do you sometimes have these symptoms?" Or maybe the poll could be done in two columns: "Sometimes" and "Always" or "Usually" or "Frequently."

Kim, are parallel vertical columns an option?
I was thinking of just repeating the symptom questions. First question is CURRENT, second question is HISTORY.

For example:

1.What are you CURRENT cognitive symptoms?

  • brain fog
  • memory loss
  • confusion
  • word finding problems (what the heck is that word that I learned from Jody?)
  • dyscalculia
2. Have you had any of these symptoms in the past?

  • brain fog
  • memory loss
  • confusion
  • word finding problems (what the heck is that word that I learned from Jody?)
  • dyscalculia

This program does have limited options. Some of the fancier (pay) survey programs offer those options, but this is about as good as it gets for FREE.
 

gracenote

All shall be well . . .
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I would also be interested in:

where the person was when first becoming ill
where the person lives now
any relatives with same or other diagnosis and if so who and what
any close acquaintances with same or other diagnosis

Maybe there is a better way to ask questions around contagion, inheritability, outbreaks, etc.

Also, I'm sure there are lists of symptoms as parts of studies and parts of patient support groups that might help in being more thorough (and/or more precise).

Kim - if you leave the simpler version of Bell's scale, it looks to me like level 2 and 3 say the same thing.
 

julius

Watchoo lookin' at?
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Maybe simpler than a past and a present section, just have responders rate their symptom if it was present at any time during the illness.

For example, if you had moderate brain fog five years ago, but not now...just rate it as moderate brain fog.

We'd still get the information we want, I think, and it would be less daunting for people to complete.
 

Lily

*Believe*
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I don't want to get carried away here (and possibly someone already suggested it, & I missed it).....but I think it would be interesting to do the same with those who've tested negative and compare the two data sets.