This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi NHE,

I agree that the second option is best. I wrote a draft intro to such a thread a while ago and will pm it to you.

Radeck

Great Sharon!
The database would have to wait a little bit, until the first few treatment logs have been compiled in a spreadsheet, that is when you see if you missed anything needed for aggregated stats, before locking into a harder to change database structure. But yes, if we get to a point where we are tracking group EDSS, and you start showing a big change, that's important. Yes, always subjective, but you can't really argue about cane or no-cane, that's an improvement. Then you see if the improvements persist as time goes on. This will help all of us to keep a rational eye on this, which is important when you are being flooded with hope hormones!

Radeck, you've got the start of the template, and maybe it is already laid out somewhere I haven't seen yet, but if you could post an outline for others to comment on, then we can try the thread tactics suggested by NHE. The first thread can contain a blank template to copy, and instructions. If those on this thread prepare their logs and post them, then there will be lots of examples for others to follow.

Then we'll just kindly keep pointing newbies back to the instruction part.

I will also contact PatientsLikeMe and see if they want to help us, if their format would work. Like if they'd give access to real time reports on the CCSVI-stent group. Their template is flexible. Would be interesting if they could compare it to all other MSers that are not in CCSVI. But that can wait to until we've got a complete template.

Good idea, SJ. I'm attaching what I have now. Anybody feel free to simply take this very rough draft and post a modified version.

"The purpose of this thread is to get an overview of the experiences of patients getting tested for CCSVI and those who are getting treatment (ballooning, stents, open neck surgery, or other), be it in Italy, Poland, USA, or elsewhere. Now there has been a "patient log" thread already, but it ended up loosing structure as newbie's and other's who got exited commented on patients logs. Here we hope to collect as many accounts as possible, neatly organized without interruptions so that newbie's and others can get an overview of diagnoses and (if applicable) side effects and subjective as well as objective efficacy of treatment.

So, the idea of this thread is to have ONE POST PER PATIENT, each of which will hopefully be updated regularly using the "Edit" feature, basically however often patients like (though probably not too often as this might make the long term development hard to follow). Edits should be to the point and can include past MRI and other test results, CCSVI testing results, experiences with (if applicable) treatment and post-treatment medications, and symptom development.

For the sake of keeping the thread neatly organized, we ask others to refrain from posting comments on patients logs. Comments outside of CCSVI accounts will be erased by the moderator.

Please let me know if you think I'm missing anything and I'll update this intro post to reflect it. Thanks!"

I think it might be good to start the thread with an example patient history. I could do it in principle, as I'm still hoping to get tested at some point, but it might be better if one of the "oldtimers" starts.

Radek and Sammy Jo,


I will be glad to do a patient history. I was #3 up to bat - I have had my follow-up, so I can include that information.

Sharon

Hi Sharon,

thank you very much for the offer.

I'll send you a pm so we can coordinate the posting.

Radeck

SammyJo and I created the new thread at

http://www.thisisms.com/ftopic-8346-0-d ... rasc-.html

Radek and Sammy Jo

I have filled in the template.

Patient name: do we reference the TIMS username?

I think all the "stenters" have experienced changes which prior to the intervention we did not associate with MS. For instance, my backache - it was gone the day after surgery and has not returned.

I am afraid the thread will be "hijacked" at some point because the introduction will always be on the first page and will not be read if someone is reading the "latest" posts.

Good job you two!
Sharon

Dear Sharon and SammyJo,

I erased the patient name line as patients may prefer to just go by their TIMS login for confidentiality. Let me know if you prefer that I leave it as is. I also posted a link to this forum in the first line of the intro post, so that we can have discussion here.

I'll try to throw in a reminder post on every page or so that the tracking forum is not for discussion, and point users to this thread if they want to do so.

Radeck

Good Idea!

The posts that are up are already very helpful.

Another option that would allow data collection with no clutter would be to use surveymonkey .

The TIMS site would direct stenters to the surveymonkey site where they would complete a form. Survey monkey surveys are VERY easy to create and there are lots of options such as single answer responses, multiptle, text boxes, etc. etc. And very easy for the respondant to complete.

I use this tool a lot for work and volunteer activities.
There is a free service but that does not allow data to be downloaded.
There are monthly plans 2 about $30 or a yearly plan for about $200 that allows infinite # of surveys and respondants. Data can be viewed by anyone or by administrators. If we want a totally open survey, the controls can be set so the data can be downloaded by anyone who accesses the site to a spreadsheet or a database.

An advantage of directing people to surveymonkey would be that there would be NO errant posts on the message boards.

It would take me all of a half hour to do this.
Interested?



I guess someone could post false information and there would be no way to screen for that.

If there is interest, I could use my site license to set up a Survey monkey survey using the form you have so TIMSers can see how it would work.

P.S. Another advantage of surveymonkey is that it automatically calculates responses, percentages. This is good for easy analysis.

There would be some fields that would be mandatory to fill in (date of stent, location, TIMS identifier name,) and some that would be optional.

It would make it easier for viewers to analyze the data themselves.

Also, professionals might be more inclined to look at our self-collected research if they could easily pull some statistics. This could increase the chances that the TIMS data could inform their thoughts about CCSVI and MS.

Linda Safran a.k.a. "Sarah Bellum"

P.S. Another advantage of surveymonkey is that it automatically calculates responses, percentages. This is good for easy analysis.

There would be some fields that would be mandatory to fill in (date of stent, location, TIMS identifier name,) and some that would be optional.

It would make it easier for viewers to analyze the data themselves.

Also, professionals might be more inclined to look at our self-collected research if they could easily pull some statistics. This could increase the chances that the TIMS data could inform their thoughts about CCSVI and MS.

Linda Safran a.k.a. "Sarah Bellum"

This sounds interesting. However: Will people be able to edit their entry during time? I personally am very interested in the progress over time: does person A feel improvement right away or only in a couple of months? Is there a relapse after initial improvement etc etc. That is why you should keep the updates per person together.
But perhaps such a tool exists in surveymonkey. Certainly worth trying to find out!

Inge

Thank you Sarah Bellum for the suggestion. I'm focusing on getting the TIMS tracking going well (including translation to Italian, which I'm working on right now) and personally don't feel an urge to push too much to try to get this into a digestible format for physicians at this very early stage, when different procedures are being tried out and symptoms in most patients including EDSS are in a constant change of flux. I like the somewhat informal format of the TIMS tracking, where focus should be on subjective description of symptom changes. But I'll be very interested to see the SM format you create.

I found a perl script (thanks to all who gave me advice!) that was perfect for the MSIS scoring, it is anonymous and just calculates the score for anyone who wants to post that on their CCSVI tracking log.

I think Radeck is right, we can wait on solidifying the overall tracking project until we know more. But for those willing to post a log now, THANK YOU! It is a great help to those trying to make the decision on jumping in now.

The online MSIS link is now on the Tracking thread, or
http://healingpowernow.com/msis.htm