TIMS Survey?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

TIMS Survey?

Postby AMcG » Mon Aug 16, 2010 7:13 am

It has been said here more than once that not everybody benefits equally from liberation. Now so many people have had the treatment I think it would be helpful to know in numbers how many people who have been liberated would describe themselves as: dramatically better/ moderately better / no better or worse.

This could be achieved by a simple survey of TIMS users. I have voted in surveys on TIMS but I do not know how to set one up. Perhaps someone could enlighten me?

It also seems that your condition might change over time so maybe a three month survey, a six month survey and a year survey?

What do people think?
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Postby garyak » Mon Aug 16, 2010 8:00 am

A great Idea. I think it would be extremely valuable on many levels. Maybe you can publish the results in 18 months in a peer review journal ? Just kidding but I think it's a no-brainer idea !
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Postby Leonard » Mon Aug 16, 2010 8:28 am

make it as simple as possible.
perhaps a website where people can fill in the date and place / country (think about it) of liberation, and then ask them to tick some boxes (yes or no or present them a scale from good to bad)
max 10 question, must be simple, short, easy to read, clear = question and answer may not be subject to interpretation (and that is really a challenge).
I am sure that woudl really add a lot of value for all of us!!
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Postby codefellow » Mon Aug 16, 2010 1:19 pm

There are some who feel the Liberation Procedure made their MS worse.
For a fair and balanced survey, their input needs to be included on the scale.
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Postby elyse_peace » Mon Aug 16, 2010 2:59 pm

I agree with Garyak, it sounds like a great idea.
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Postby Fernie12 » Mon Aug 16, 2010 3:37 pm

absolutely - and I agree...we need to make sure the questions can encompass the good, the bad and the ugly...
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Postby jimmylegs » Mon Aug 16, 2010 5:50 pm

hi all why not see if this new web site could be a workable solution:
http://www.thisisms.com/ftopicp-128869.html#128869
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Postby 1eye » Mon Aug 16, 2010 8:14 pm

I posted a link to a surveymonkey survey, topic called survey

This is a freebie. All it has s name, liberation place and whether the proc was not doing anything, making you better, making you worse

The link is http://www.surveymonkey.com/s/5V89WDD
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Katie41 » Mon Aug 16, 2010 9:06 pm

The survey is a great idea, but, for an increasing number of people there are several variances: first, second, or third procedures; immediately better, then worse; immediately worse, then better; slowly improving; slowly worsening. Also, a short section for a comment would be helpful. Just a thought.
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Postby blossom » Mon Aug 16, 2010 9:56 pm

i like this idea of knowing more about the people. not that i want in their life or business but so many times i read someone's story and if i'm 64- ppms -female for20 yrs.- in wheelchair 2 yrs.- arms and hands effected and bladder problems i would not be trying to relate what i might hope to achieve when treated to a male 20 yrs. old- ppms -had for 2 yrs.-with very little disability. even though we are hoping to be the one to defy the odds we need a reality check. also a comment box of some sort-like was there any signicant incident -stress-like an injury-exposure to chemical bug bite etc. that you recall before onset of ms. maybe at least when someone has gotten treated and they post they could give us a short low down on their history.
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Re: Survey

Postby NHE » Tue Aug 17, 2010 12:37 am

1eye wrote:I posted a link to a surveymonkey survey, topic called survey

This is a freebie. All it has s name, liberation place and whether the proc was not doing anything, making you better, making you worse

The link is http://www.surveymonkey.com/s/5V89WDD


Is it possible to view the results?


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Postby AMcG » Tue Aug 17, 2010 2:40 am

Thanks for the comments.

I had originally thought to keep this simple as several people have suggested. There is already the tracking thread for more extensive reporting. I also thought a three-way split was the most simple. If negatives need to be specifically counted then a four way split is easy :

dramatic improvement / moderate improvement/ no improvement / worse

I agree that recording “first, second, or third procedures; immediately better, then worse; immediately worse, then better; slowly improving; slowly worsening.” would be useful but I am not sure how to do it. If I have understood how the survey works it simply counts how many ticks in each box so if ten people ticked the box saying ‘slowly worsening’ it would not be possible to know which of the other boxes these people had ticked. So you would not know whether they were worsening from a dramatic improvement or moderate improvement or no improvement. You could get an indication of this by comparing the totals from each survey (three months on – sixth months on – year.) If these were recorded as comments (if free text comments are allowed) then they could not be counted. I think I would prefer to keep it simpler.

I can also see real value in the suggestions from blossom. But this seems to me like something different to a quick survey. It sounds more like the registry of symptoms that Zivadinov and Zamboni have both already suggested. This definitely needs doing but is a much more complicated affair than my idea.

I do not want to make the survey too onerous or complicated. So I am now suggesting this:

Tick one of the following to describe your improvement

Dramatic improvement
Moderate Improvement
No improvement
Worse

Tick any of the following which apply

I have had one procedure
I have had two procedures
I have had three procedures
I am slowly improving
I am quickly improving
I am slowly worsening
I am quickly worsening

I will create four surveys for

Immediately after your procedure
Three months on
Six months on
Twelve months on

Results will be accessible in the surveys section which you access in the modules menu on the left hand side of the screen.

I would hope to put the surveys up soon (within a day?) so any final comments help would be welcomed.
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Postby 1eye » Tue Aug 17, 2010 9:28 am

http://www.surveymonkey.com/MySurveys.aspx

You should be able to design your survey using this account.

username is 1eye
password is password
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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ccsvi-tracking.com

Postby TvG » Wed Aug 18, 2010 2:37 am

CCSVI-Tracking.com shows the effect of the Liberation Treatment in MS patients in graphs.

Registered participants can input their data (personal experience of symptoms and professional examination results if available) every month and view their personal graphics. Aggregated graphics will soon be available.

The CCSVI-tracking site is now open for registration of participants. You can visit http://www.ccsvi-tracking.com/_contact.php to submit your registration request.
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Postby AMcG » Wed Aug 18, 2010 6:10 am

Thanks for the posts 1eye and TvG. I have looked at them and they both look good but they seem much more complicated than I envisaged. If the CCSVI-survey site takes of it will certainly make my little pole redundant.

So I decided to keep mine even simpler. I hope it does become redundant but just incase it is some use I have gone ahead as I outlined but with only the first question. It is in four parts for each time frame.
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