Help us with the XMRV Survey - feedback, proof-reading, and comments needed

[_Kim_]

On another thread, members have been creating a BIG survey. We will eventually have 3 versions: one for those who tested positive for XMRV, one for those who tested negative, and one for those who haven't been tested.

Currently, we have compiled a draft version of the XMRV POSITIVE SURVEY that needs everyone's eyes to look it over. You can leave comments in the text boxes at the bottom of the questions (Other symptoms, etc), or you can also leave comments on the last page.

I will eventually merge the two threads together, but I wanted to start fresh so that we can modify it from this point on.

Anyone can take this draft version of the survey - no matter whether you tested or not for XMRV. You don't need to answer any of the questions, just provide suggestions and comments. These results will not be recorded. Thanks.

Here's the XMRV POSITIVE SURVEY (BETA)

Note: I will be leaving the survey up there -AS IS- for a few days to accumulate some comments/feedback. No changes will be made to the survey during this time.

 

[dsdmom]

I would have added this somewhere in the survey itself but didn't see a place...
Regarding #21 (When I experience a worsening of these symptoms after exercise/exertion/activity, the onset typically occurs), what about another question about how long those symptoms usually last? <1 day, 24 hours, 48 hours, 72 hours, >72 hours, etc....

 

[_Kim_]

I would have added this somewhere in the survey itself but didn't see a place...
Regarding #21 (When I experience a worsening of these symptoms after exercise/exertion/activity, the onset typically occurs), what about another question about how long those symptoms usually last? <1 day, 24 hours, 48 hours, 72 hours, >72 hours, etc....

Great idea. I just added it to page 3 as question #22

I had to zero out results to add this question, so if anyone left comments on the survey in the last few minutes, I didn't get them. Sorry.

ETA: I did get this comment, though. No need to repeat this one:

can't remember how to perform previously familiar tasks, like driving, using gadgets.

 

[kit]

"can't remember how to perform previously familiar tasks, like driving, using gadgets."

That's called impaired procedural memory.

 

[_Kim_]

"can't remember how to perform previously familiar tasks, like driving, using gadgets."

That's called impaired procedural memory.

Thanks kit!! This is the kind of help we need. Let's get the wording just right. And if there is medical terminology that needs an explanation, let's put it in.

 

[valia]

"can't remember how to perform previously familiar tasks, like driving, using gadgets."

That's called impaired procedural memory.

That was me, I didn't know there was a name for it.

I parked my car 18 months ago, I have visited it a few times, the last time I couldn't even remember how to start it.

 

[hensue]

After physical exertion the symptom list, I might have no symptoms and pow. Nausea, gas, bloating frequent urinating, Pain terrible pain, body so weak have to lay down. Voice gets weak, pain like cystitis, headaches it puts you to bed.
Voice weakness,

I see some of those on the survery but this is what I am truly interested is to see exactly what happens after the physcial or mental exertion. Do I put all the above symptoms in the flu like?

 

[hensue]

I found so many symptoms on the survey that I did not know existed. I also found symptoms that I have and I finally gave them a name.

 

[_Kim_]

After physical exertion the symptom list, I might have no symptoms and pow. Nausea, gas, bloating frequent urinating, Pain terrible pain, body so weak have to lay down. Voice gets weak, pain like cystitis, headaches it puts you to bed.
Voice weakness,

I see some of those on the survery but this is what I am truly interested is to see exactly what happens after the physcial or mental exertion. Do I put all the above symptoms in the flu like?

hensue, this is what our list looks like right now for PEM symptoms. What should we add?

• Difficulty sitting up or standing
• Flu-like symptoms
• Hangover feeling
• Impaired mental abilities
• Impaired speech
• Muscular weakness
• Temporary immobilization
• Seizures
• Feeling 'toxic' or 'poisoned'
• Exacerbation of most or all ME/CFS symptoms
• Swelling in lower extremities (legs and feet)
• Swelling in hands
• Anxiety (panic attacks)
• Drop in heart rate
• Voice changes

 

[_Kim_]

I found so many symptoms on the survey that I did not know existed. I also found symptoms that I have and I finally gave them a name.

I didn't even consider that this survey in itself might help to educate patients about symptoms that are correlated with ME/CFS. Thanks for pointing that out, hensue.

 

[hensue]

you have the muscle weakness, I assume that is being so weak you cannot do anything but lay down, my voice gets weak and you have the voice changes,

The extreme nausea, headaches, frequent urination, gas cystiis like pain and pain all over body. Flulike symptoms, they are sooo bad it just doesnt seem to capture the feeling. I guess excerbation of cfs symptoms will do.
That is the worse part of the whole deal to me and I guess that is where I want to see if everybody has the symptoms.

 

[hensue]

Really looks great the whole survey. As time goes on we can go in to detail of pem and severity.

 

[valia]

hensue, this is what our list looks like right now for PEM symptoms. What should we add?

• Difficulty sitting up or standing
  
  
  

I feel that difficulty sitting up or standing should be seperated

If I stand up, within 2 minutes the pain becomes unbearable + feeling faint, sitting down aleviates these symptoms.

Several times a day when sitting I feel that I can't support my upper body and must lie down, but I can at times sit quite comfortably for several hours

 

[Advocate]

In case anyone thinks we can get our survey results published, here's a suggestion made by someone on a Yahoo list:

With the Journal of Chronic Fatigue Syndrome no longer operating, people
could consider submitting material they might have submitted to the JoCFS,
to the Bulletin of the IACFS/ME. Instructions are at:

http://iacfsme.org/BulletinArchives/tabid/309/Default.aspx

 

[George]

Very interesting

O.k. I'm having a really bad day today but I think I can remember what I want to say, hope it makes sense (grins)

I was surprised to find that my physical impairment would be in the 40 category, my cognitive in the 60 category and my pain in the 80 category?

Granted I had a few extra IQ points to lose but I was surprised to see the difference in the pain category. Anybody else all over the place like that?

 

[Advocate]

I was surprised to find that my physical impairment would be in the 40 category, my cognitive in the 60 category and my pain in the 80 category?

Hi George,

I had originally hoped the survey would use the single, 10-category Bell disability scale, but I think your experience shows that it was better to use the three different scales.

The three scales are long and require a good bit of reading, so I'm wondering if you found them tiring. At least now you have your numbers, and you won't have to do it again until you start to get well.

I think a lot of people have been told over the years that they look fine, they talk fine, they can write fine e-mails--so why can't they exercise more? Why don't they just get over it?

I know of several others whose physical impairment is vastly greater than their cognitive impairment. (And vice versa.) This will be interesting.

 

[Advocate]

Testing my new signature. Hope it works. If it's not accurate or if it's confusing, let me know.

 

[flybro]

its not quite working Advocate, the quote thingies have split I think

and the link isn't working.

Also should I look at the survey and comment, I haven't been tested for XMRV yet.

I think this survey is going to be the best research tool around.

I wonder if we would be ablr to predict who will be positive for what.

Someone mentioned crimson Crescents in the mouth, has any one got an imgae with directions. Or if someone has them, can they get a picture and post it, so we know what to look for. LOL Cheers.

 

[George]

4 paws up

Well, I defiantly give it 4 paws up (the survey). It was interesting all the way around!

Also, what about sodium laural sulfate in the chemical sensitivities. The reason I ask is that there seems to be enough people with the sensitivity to warrant manufactures producing SLS free products. I know I can't use anything with SLS or any of it's near cousins. I did find a SLS free toothpaste I can use which is nice but I'm allergic to cocomidepropel betain as well. So no shampoo, soap, laundry detergent etc. for me. I have to wear gloves to do the dishes and found out I'm allergic to latex now but not the ummmm. . . drat, the other ones. (grins)

Sorry, I walked every day last week just to check my tolerance, I do this every 4 months and I'm oooooout of it for now.

 

[thefreeprisoner]

George - yeah I'm all over the place too.

Physical 50% (as of last week and this week, yeahhh! Before that it was 40%)
Cognitive 70%
Ability/severity 70%

-Rachel xx