Post by alex on Mar 27, 2007 18:30:19 GMT -5
I am doing a survey to collect data about Morgellon symptoms, remedies, environments, medical history, theories, etc. and then filter the data to find which symptoms are the most common and unique. And find what remedies seem to work best and what does not work or should be avoided. And maybe find some common environmental or medical history that will help determine the source.
I got the idea to do this after reading thousands of forum posts and trying to find out how some remedy had worked several months after someone had tried it. Some people might say that something they tried worked well but then how can you tell if they had the same symptoms that you do. I want to collect data and then organize it so that you can see what remedies have worked best for people with similar symptoms.
I have been doing this for over a year and I have been learning a lot. At first I thought that a common source would be obvious very quickly and the best remedy would also be easy to see. But as you know or will learn soon, this is no ordinary "bug". Due to the unusual nature of this disease, the "survey" is not like a normal one that has a fixed number of questions that runs for a few months and then closes and the data is analyzed and then maybe a new survey is started with new questions. This survey is dynamic in that it can expand in areas that need more detail and open new areas of investigation without having to close and restart. I still use the original survey to start, but then allow each survey to be updated by the individual who took the survey. So if a new group of questions is added, anyone (hopefully everyone) can come back and add or update their data. If someone has completely recovered, I hope they would return and get their remedy data up to date.
I do not expect the "authorities" to have any cures for a long time, so I believe that we are on our own to find what helps, what hurts, etc. Here is a brief explanation of how the survey and database works:
If you have not already done the Survey follow these steps:
1. Register - Create a Username and Password here:
usp-db.com/Index.asp
Use Numbers and Letters only, no spaces
2. Go to the Survey. This should be automatic after registering.
NOTE:you will have to manually re-enter your username again.
3. After you finish the Survey, allow 24 hours before trying to access the Database and the expanded sections of the Survey.
4. You can access the Results Pages immediately after finishing the Survey. On left side menu list at bottom click on "Results Pages".
Your data will be added within 24-48 hours.
These steps will help protect the database and the privacy of it's users. No personal data such as email addresses is ever posted. Privacy is always a high priority. Some people want to contact or be contacted by others nearby while others want complete anonymity and I have created a system to allow complete control of "visibility".
If you already took the Survey, you can login to the database and update your data and the expanded sections.
Some misc. notes:
1)A new section that I think is very useful is the DOP Doctor List. You can help others avoid the doctors that diagnosis DOP without proper procedures by listing them.
2) I recommend that you use Internet Explorer 6 to do the Survey. I have been using Firefox lately and while testing the Survey I found it has a few problems. I don't know about Netscape....does anyone use that? IE 6 works perfectly with JavaScript, cookies, etc. enabled.
I will be posting some data here soon...some small charts, etc.
Alex
I got the idea to do this after reading thousands of forum posts and trying to find out how some remedy had worked several months after someone had tried it. Some people might say that something they tried worked well but then how can you tell if they had the same symptoms that you do. I want to collect data and then organize it so that you can see what remedies have worked best for people with similar symptoms.
I have been doing this for over a year and I have been learning a lot. At first I thought that a common source would be obvious very quickly and the best remedy would also be easy to see. But as you know or will learn soon, this is no ordinary "bug". Due to the unusual nature of this disease, the "survey" is not like a normal one that has a fixed number of questions that runs for a few months and then closes and the data is analyzed and then maybe a new survey is started with new questions. This survey is dynamic in that it can expand in areas that need more detail and open new areas of investigation without having to close and restart. I still use the original survey to start, but then allow each survey to be updated by the individual who took the survey. So if a new group of questions is added, anyone (hopefully everyone) can come back and add or update their data. If someone has completely recovered, I hope they would return and get their remedy data up to date.
I do not expect the "authorities" to have any cures for a long time, so I believe that we are on our own to find what helps, what hurts, etc. Here is a brief explanation of how the survey and database works:
If you have not already done the Survey follow these steps:
1. Register - Create a Username and Password here:
usp-db.com/Index.asp
Use Numbers and Letters only, no spaces
2. Go to the Survey. This should be automatic after registering.
NOTE:you will have to manually re-enter your username again.
3. After you finish the Survey, allow 24 hours before trying to access the Database and the expanded sections of the Survey.
4. You can access the Results Pages immediately after finishing the Survey. On left side menu list at bottom click on "Results Pages".
Your data will be added within 24-48 hours.
These steps will help protect the database and the privacy of it's users. No personal data such as email addresses is ever posted. Privacy is always a high priority. Some people want to contact or be contacted by others nearby while others want complete anonymity and I have created a system to allow complete control of "visibility".
If you already took the Survey, you can login to the database and update your data and the expanded sections.
Some misc. notes:
1)A new section that I think is very useful is the DOP Doctor List. You can help others avoid the doctors that diagnosis DOP without proper procedures by listing them.
2) I recommend that you use Internet Explorer 6 to do the Survey. I have been using Firefox lately and while testing the Survey I found it has a few problems. I don't know about Netscape....does anyone use that? IE 6 works perfectly with JavaScript, cookies, etc. enabled.
I will be posting some data here soon...some small charts, etc.
Alex