Patient-Formulated Lyme Disease Survey Draft

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
velvetmagnetta
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Joined: Sun 23 Feb 2014 22:47

Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sun 24 Aug 2014 3:43

After looking through all the questions, I noticed that a lot of them are missing.

Stand up and be heard!

Everybody can make sure their questions are on those Docs I posted and if your questions are missing, please re-post them here. That way, it will be easier for us to cut and paste them into their appropriate Document categories.

Camp Other - I didn't see all those really good questions about how hard it is to comb your own hair or stir a bowl of thick food, etc. I thought those were really good and descriptive questions and that people filling out the survey would be able to relate to - I know I would be excited to see those questions on a questionnaire - I would think, "Finally, somebody gets it!"

Some of mine are missing, too, so I'll have to go find them. Anybody who's questions are missing - re-post them here - they are not missing on purpose!

ChronicLyme19 and I have a lot of questions about certain questions - especially their meanings - some of them need clarification, so if you all could look on those docs and read some of the comments, then maybe you'll see a question we have about one of your questions, and you can answer or clarify for us. Remember - anyone can leave a comment.

I split the long document into 6 smaller ones as best I could - but I am often very ill, so I made a lot of mistakes. Please come and fix them! Put the questions in their appropriate categories.

Thinking about this stuff makes me dizzy sometimes - but Duncan is right, it really is fun! But CL19 and I can't do it all by ourselves. I am not all that well very often and, even more importantly, I don't have some of the experience you guys have - Our combined talents is what is really going to make this thing happen and be the definitive Lyme questionnaire.

So far Duncan has stepped up, LHCTom has signed up, ChronicLyme19 is there with some great and invaluable suggestions, and even Phyfe in her condition is helping! Camp Other is on his way (can't wait til you can get there CO!).

ChronicLyme19, while doing some editing, brought up a potentially very exciting idea for us!

velvetmagnetta
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Joined: Sun 23 Feb 2014 22:47

Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Mon 25 Aug 2014 14:53

Oops...I missed about a million questions when I was splitting that document up into categories!

I though Camp Other had a bunch of really good questions! I even missed my own questions!

Hahahahaha!

Duh...

If anybody wants to help me finish categorizing, the document is here:

https://docs.google.com/document/d/1_Pw ... GVLGc/edit

and the categories are:
G - for Demographics
D - for Diagnostics
S - for Symptoms
T - for Treatment
V - for Sociological Views (What people think, opinions, how they gather research, etc.)
M - for miscellaneous - questions that don't fit into any of those categories
I'm on question 262

To be fair, my eyes were crossing by the time I got to question 30 :?

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Mon 25 Aug 2014 16:53

I've split the PPLS Treatments section into two documents:

PPLS Treatments Conventional:

https://docs.google.com/document/d/19b5 ... 55mz4/edit

And

PPLS Treatments Alternative:

https://docs.google.com/document/d/1Aup ... GHqcI/edit

---------

Is everybody working on editing the docs I posted? Or are you all working on a different doc? I just haven't seen anybody post here in a while and I've only seen couple people editing, so I am just wondering if everybody's busy doing other things? Or am I missing something?

I asked LHCTom to invite me to work on whatever he decided to do with the documents, but he never did, so I assumed he was waiting for us all to finish splitting up the questions into categories.

If this is not the case, are you all working somewhere else? Am I not invited? :cry:

I was under the impression that we were splitting up the long document first, then we were going to put them back together and add all the header formats later.
Last edited by velvetmagnetta on Mon 25 Aug 2014 17:29, edited 2 times in total.

duncan
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by duncan » Mon 25 Aug 2014 17:22

Sometimes the Forum is not as busy as other times. When news happens, someone will post about it, or open a new thread with an issue they have thought of, and conversations will ensue. Like Lyme itself, discussions here are more or less relapsing remitting, i.e., they undergo and ebb an flow.

As for the survey, if only a couple people are up to working on it, or only a couple are inclined to, that is ok, too. Many have already provided so much in getting us as far as we have come. But velvetmagnetta, I just want to say you and ChronicLyme19 have done a fantastic job with getting this to a stage where it is workable.

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Mon 25 Aug 2014 17:30

OMG Duncan....I think more people are commenting, I just didn't know where to look!!!

I just sent you an email about it....Durrrrrr....

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ChronicLyme19
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Location: NY, USA

Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Mon 25 Aug 2014 21:17

duncan wrote:Sometimes the Forum is not as busy as other times. When news happens, someone will post about it, or open a new thread with an issue they have thought of, and conversations will ensue. Like Lyme itself, discussions here are more or less relapsing remitting, i.e., they undergo and ebb an flow.
1+ LOL

Yeh, I had family stuff this weekend. Will take a crack at it this week tho. I want to finish getting the formatting cleaned up on the questions we have and then I'll start combing through this thread and see what questions got left off by mistake and add those in.

Good call on the commenting, I forgot you could do that.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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ChronicLyme19
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Location: NY, USA

Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Tue 26 Aug 2014 2:02

Where should the tick bite Qs go? In demographics or in diagnostics?
Half of what you are taught is incorrect, but which half? What if there's another half missing?

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Tue 26 Aug 2014 2:43

Does anyone have any ideas for ChronicLyme19's question?

She may have resolved it by now, but everybody's input is greatly appreciated! We can always change it.

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Tue 26 Aug 2014 2:52

I have FINALLY finished putting all the 300 questions I somehow missed in categories!

And now people are editing them and moving questions to different categories, where appropriate. And everybody's making the documents much prettier to read - but we're mostly still editing right now.

Join in and comment or PM me an anonymous email address (it's easy to create one with Google - then you can delete it when we're all done) if you want to join in the editing fun!

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ChronicLyme19
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Tue 26 Aug 2014 4:44

Ok, so I at least grouped all the tick bite Qs together. I also started tabbing in the follow on questions to "if yes" so that they would be easier to keep together.

I went through and reformatted and deleted the extra Qs and organized the diagnostics section a bit:
https://docs.google.com/document/d/1d_u ... X_P1c/edit

Now at least for that section we should be able to see easier what's missing. I plan on doing the same to get the other categories into better shape but it's going to take a few days.

Everyone re-look at that section to make sure nothing was missed, add it back if it never made it. Just try an see what types of Qs are grouped together and add them in the best place.

Time to ZZZZZZZZZZz.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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