This project has two goals; one is asically to provide a complete picture of the ME/CFS community; ie documenting what symptoms are present, what treatments are used, how the disease progresses, experiences at doctors offices, type of onset, tests used by doctors...virtually everything. (Most of the data will be aggregated; ie we'll show average # of doctors seen, average satisfaction level with doctors, etc.) The 'articles' (as they're called in the WIKI) involve data that will go into the Data Repository/Treatment Review project. Several ME/CFS researchers have expressed interest in using the data in their papers.
The second goal is to create a Treatment Review Program that allows patients to quickly find that have similar characteristics and learn what works for them - thus cutting down their search for effective treatments. Learn more about the project here.
Now we're trying to flesh out the data we need to ask CFS patients about. We need information on what kinds of Positive Test Results to include, what kinds of supplements/Prescription Drugs/Therapies/Kinds of Doctors Seen/Symptoms, etc are used or present. We also need ideas on what kinds of questions to ask. What do you think the world is not understanding about ME/CFS? The best way to go about this is just to be bold and dive in - scatter ideas across the pages. This is a group effort! See below for how to add data.
The first sections of these 'articles' are taken from questionnaires that other researchers are using. We want to try and keep their questionnaires as intact as impossible. Please, therefore, either add your suggestions below the questionnaires - or highlight your additions using color in the document. Please do not, however, change the wording of any of the questionnaires - simply add to them. Happy hunting - thanks!
-Esther12 edit/bump: This section is confusing without the intro. Up to the top!
-Edit2: It didn't go to the top! And we can't sticky either?
The second goal is to create a Treatment Review Program that allows patients to quickly find that have similar characteristics and learn what works for them - thus cutting down their search for effective treatments. Learn more about the project here.
Now we're trying to flesh out the data we need to ask CFS patients about. We need information on what kinds of Positive Test Results to include, what kinds of supplements/Prescription Drugs/Therapies/Kinds of Doctors Seen/Symptoms, etc are used or present. We also need ideas on what kinds of questions to ask. What do you think the world is not understanding about ME/CFS? The best way to go about this is just to be bold and dive in - scatter ideas across the pages. This is a group effort! See below for how to add data.
- Feel free to add any information you think might be valuable in each page by clicking the EDIT tab.
- You can discuss what you think should be in each page by using the DISCUSSION tab.
- Add an new page by clicking on add new Article. A new page should focus on a new set of questions. For example we just noticed that the Functionality questionnaires don't say anything about patients functionality over time so we added questionnaires that flesh out patients who have experience large changes in their health over time called Relapse and Rebound
The first sections of these 'articles' are taken from questionnaires that other researchers are using. We want to try and keep their questionnaires as intact as impossible. Please, therefore, either add your suggestions below the questionnaires - or highlight your additions using color in the document. Please do not, however, change the wording of any of the questionnaires - simply add to them. Happy hunting - thanks!
-Esther12 edit/bump: This section is confusing without the intro. Up to the top!
-Edit2: It didn't go to the top! And we can't sticky either?
) Anybody can edit - hopefully they will do judiciously