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Post by skytroll on Aug 23, 2005 8:43:48 GMT -5
Alex,
BUMP
Skytroll
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Post by Mouse on Aug 23, 2005 10:43:08 GMT -5
YOU are just TRYING TO SAY WE ARE CRAZY with your "RESEARCH" just like SARAH BONE!
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Alex
Junior Member
Posts: 52
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Post by Alex on Aug 24, 2005 19:32:05 GMT -5
YOU are just TRYING TO SAY WE ARE CRAZY with your "RESEARCH" just like SARAH BONE! IF that is true then you are no crazier than I am. (I know I am not crazy, but I don't talk about some of the bizarre things I have seen with anyone un-infected). Did you read the part before the survey ".... No information gathered or displayed on this website may be copied or used by anyone for any purpose except the people submitting data for the purpose of learning how and where and why they contracted this disease. The data presented here is for the exclusive use of people with symptoms of "Morgellons" disease as described by the Morgellons Research Foundation or USP (unidentified skin parasite) as described by the National Unidentified Skin Parasite Association...." I know of Sarah B.'s survey and it is strictly a school project. Here is an excerpt from her reply to my email: > 1) will people responding to the survey be able to > see at least the totals of each question when > finished or when to poll is closed? Everyone (including participants) will be able to see the results through academic publishing, which will be available through www.uga.edu. This will take at LEAST 6 months, as the data collection continues through August. and another question: > 3) what is the purpose of your survey? I'm seeking information about demographics, symptoms, management behaviors, social networks, health co-morbidities, so we can find commonalities and use this study as a springboard for future research. "Future research" is not going to help me or anyone else soon enough. The purpose of my survey is to find 1) what CURES the disease best or at least what knocks it down best and 2) where it comes from so we can avoid re-infection and 3) I would really like to help people avoid having to pay for treatment from doctors that dismissed their symptoms as "just a minor fungal infection" or (worse yet) as delusional parasitosis. I think anyone who has been to doctors that prescribed medications or treatment for any of the mis-diagnoses we are very familiar with, after they were given information from the patient about the unique nature of this infection, should be compensated for the expenses and additional pain and suffering that resulted from the doctor's ignorance. Alex PS. in case you are wondering, I am not an attorney. I never even went to college. ;D
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Alex
Junior Member
Posts: 52
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Post by Alex on Aug 26, 2005 10:09:54 GMT -5
Short survey is offline Comprehensive survey it ONLINE I am working on the results, both the summing of data and displaying the data which in some cases will be graphs or charts or tables. I think I will close the short poll. It's not working and the comprehensive survey covers the same things with more detal.
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Post by skytroll on Aug 26, 2005 10:42:05 GMT -5
Good work Alex. Don't let Mouse ruin your survey. You are doing a great job and I for one certainly appreciate Sarah Bione. She is giving this a try. She has to go up against the old established paradigms, but, I do believe her heart is in the right place.
Mouse, WAKE UP. get out of the woodwork and supply some info. These attacks are not warranted.
Skytroll
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Post by kranny2 on Aug 28, 2005 15:11:19 GMT -5
I responded to this survey but need to modify a couple of answers. How do I do that? Thanks for taking the time to do this! Great idea.
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Alex
Junior Member
Posts: 52
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Post by Alex on Aug 28, 2005 21:16:12 GMT -5
I responded to this survey but need to modify a couple of answers. How do I do that? Thanks for taking the time to do this! Great idea. You should just do the survey again using the same name. If you change a text field area, it will overwrite the first one and if you leave a text field blank, whatever was in that field will remain. If it is YES/NO type things, you could leave everything else blank and only the ones you answer will overwrite the first. If you need more help, don't hesitate to ask. You can also use the private message feature. I will probably see the question sooner and reply faster. Alex
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Post by porousboris on Sept 4, 2005 16:40:12 GMT -5
I had to come back and say "excellent!" Why hasn't anyone done a survey like that before? I read things here and there but I wanna kno statistically what remedys work BEST for MOST people. I have totaly given up on finding a doctor that really is a "Doctor" by nature. I mean if you got scurvy and your doctor doesn't tell you to eat a few limes & oranges but writes you a script for some synthetic chemical engineered crap with possible side effects including siezures, blindness or death, then you know you are on your own. This itchy-hairy-crawly-bitey thing is dissolving me. Anywhere on my body where skin touches skin, THEY are there...appearently spewing spores out and into the skin wjere it sprouts and spews spores back and each time the skin gets weaker...and more porous. And I am so tired all of the time. the
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Post by sparkyside2 on Sept 9, 2005 19:13:57 GMT -5
Alex - I just want to be sure that my info was included in the results. I completed the questionnaire in the early stages. I don't know if I did the long or short version. When I clicked on the link for the short poll results - I was given another link to select (Short poll down). Looking at the results on that page I saw there were no results from GA. I completed two forms for GA. Do I need to redo the questionnaire? Sparky
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Alex
Junior Member
Posts: 52
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Post by Alex on Sept 10, 2005 7:46:01 GMT -5
Alex - I just want to be sure that my info was included in the results. I completed the questionnaire in the early stages. I don't know if I did the long or short version. When I clicked on the link for the short poll results - I was given another link to select (Short poll down). Looking at the results on that page I saw there were no results from GA. I completed two forms for GA. Do I need to redo the questionnaire? Sparky There are 2 entries for GA, but nthey are from 3 weeks ago. The links to the short poll will work but it is marked as OFFLINE. I started to rebuild it (first 5 questions of 20) and checked to see if it was working correctly. It was working but I didn't go back to finish. Instead, I have been working on the large survey results display. The large survey has about 57 numbered questions with dozens of input areas for multiple answers and sub-sections so it is literally 10 times bigger. The short survey adds your data and displays the updated totals immediately. The big survey does NOT update immediately, but it does have a link to a results page at the end. I should probably clarify that. There are some entries from GA in the big survey, but they are not recent. So I don't think you did it. Here is a links list: Direct to big survey: home.comcast.net/~usp-db/DBform.htmMain index of site: home.comcast.net/~usp-db/index.htmLymebuster thread (I use this to announce when results are viewable, etc.): lymebusters.proboards39.com/index.cgi?board=rash&action=display&thread=1124064457Thanks for contributing data I plan to let the big survey run for a few months at least, so send everyone you know (that's a genuine USP/morgy case) And thanks for replying in the thread, It helps to keep it high on the list.
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Post by Administration on Sept 10, 2005 14:46:13 GMT -5
Sorry.. When ya want something stuck up to stay.. just write either me, Patti, Anthill or Deb and we can sticky it for you.. Kerry
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Post by lmsunnygirl on Sept 13, 2005 1:28:02 GMT -5
I dont know if anyone else has had this problem, but I have filled this out the questionare 3 times and it would not submit! I thought maybe it had gone thru but Minnesota still showed 0!!!!!Whats up with that? I also had to try and log on tonight about 5 times and it said that I did not exist? ???Any suggestions!
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Betsy of California
Guest
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Post by Betsy of California on Sept 13, 2005 3:06:54 GMT -5
Nice survey-good idea--If there is a problem with participation, Isuggest that you ask MARY to send this out in an e-mail request. She could send the survey itself for best participation. She could send a note, letter, memo, etc with the link directly to the long survey and a definite request for registered participants to fill it out by a desired deadline. She could encourage people by telling them that an organized list of symptoms (evolving with their imput) can be helpful to take to doctors, send to doctors, etc. I bet there would be more respose. Can you ask her to do this? Can we then have (at a later date) the list of symptoms that present in Morgellons. Thanks for your hard work -- Betsy (sorry I took so long to respond myself)
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Post by B Ross on Sept 13, 2005 3:12:11 GMT -5
right on--with everything you said-- Why don't we all go turn ourselves in to the CDC "en masse" with a prominent newsperson notified so we don't disappear into their dark web. Betsy
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bjkth956
New Member
create peace...turn the other cheek
Posts: 7
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Post by bjkth956 on Sept 13, 2005 14:20:10 GMT -5
How come i can't even get to the survey?? I double click on the url in your post and nothing happens. I only have access to the 'puter a couple times a week and sometimes not for very long. Help! I'm getting more depressed every day. I'm bipolar and haven't been manic for 2 weeks, just slowly going down into the dark. I need some hope.
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Alex
Junior Member
Posts: 52
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Post by Alex on Sept 13, 2005 15:16:46 GMT -5
There were a few duplicates in the past week. When you click the submit button and you then see a confirmation page, the survey has been submitted. If you go back to change something, it creates a duplicate when you hit SUBMIT again. At the beginning of this thread I said, "The results for the detailed survey will be available after a sufficient amount of data is submitted (probably a few weeks at least). There is more explanation on the site. ..." That survey does not update the results immediately. I try to do it once a day at least. HMMMM...I just looked and there still is no Minnesota listed. If you send me a Private message with your username, I will check. I don't think any data has been lost. About the link not working.....It works for me. Try this direct link to the survey: home.comcast.net/~usp-db/DBform.htm
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Alex
Junior Member
Posts: 52
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Post by Alex on Sept 13, 2005 22:30:27 GMT -5
"Nice survey-good idea--If there is a problem with participation, Isuggest that you ask MARY to send this out in an e-mail request. She could send the survey itself for best participation. She could send a note, letter, memo, etc with the link directly to the long survey...."
That sounds like a good idea. Now that this thread is pinned at the top of the Morgellons area, I think the rate of surveys submitted per day will increase tremendously. I am manually checking them and updating the results pages as well as building the remaining results pages. I want to wait and see how much the pinned topic affects the survey before doing emailings. Although I want to get as many people as possible to participate as soon as possible, I want to be sure that no data gets lost or corrupted and I'd like to refine the survey to add a few things that have been suggested. Once the survey is as complete as possible and I am sure that the data will be all good regardless of how fast it comes in, then ...absolutely!! everybody possible, as long as they are genuine.
hmmmmm ,....I just thought of something...is the "Mary" you referred to Mary Leitao? I certainly would like to get everyone registered at MRF to do the survey...or, rather, the refined, perfected survey.
But in any case, I still want to wait before inviting a possible deluge of data without being sure that no one's data and time will be wasted.
Thank you very much for the idea.
Alex
PS, watch the survey submission rate graph on first page of thread, updated every 2 or 3 days
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Post by Newby on Sept 14, 2005 11:45:01 GMT -5
Alex:
Your survey is excellent. I just finished. Thank you.
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erika
Full Member
Posts: 186
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Post by erika on Sept 14, 2005 18:50:43 GMT -5
thanks
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Alex
Junior Member
Posts: 52
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Post by Alex on Sept 15, 2005 16:03:33 GMT -5
Just in case you are returning to this thread at the end without seeing the beginning again, I update the first post frequently. A notice I added today about quotation marks in survey text areas is important to see before you do the survey. Quotes are used to separate each answer in the stored file. When it's imported into excel, the text area with extra quotes gets spread out over several answers. Who woulda thought..... So if you want to use a quote, use a single ' instead of ". Alex
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