1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Introduction

Discussion in 'Patient Data Repository & Treatment Review Project' started by Cort, Jun 4, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    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.


    • 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?
  2. awol

    awol *****

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    Hi Cort,

    I don't entirely understand the point of keeping the originals in this case. Can't we just build our own optimized questionaires based our experiences? I think in the end we would come up with something much better if we felt free to optimize.
  3. ahimsa

    ahimsa Senior Member

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    Hi all,

    Perhaps this introduction article should be sticky so it stays at the top? Is that possible?

    I was a little confused about the overall goal because I didn't read the introduction first. Folks definitely need to read that first. (maybe even change the title to Read Me First, LOL!) Of course, I'm not familiar with creating/editing any other wiki databases (e.g., I've never tried to edit wikipedia, for example) so that may be another reason for my initial confusion here.

    Marjorie

    PS to Cort regarding the originals - I hope you have your own copies of any originals. I'm sure that someone out there is going to write over some of the original text accidentally, either out of confusion or misunderstanding the instructions. Or do you or some moderator have to approve any changes that are made? Anyway, just a thought so that you don't lose any data.
  4. Cort

    Cort Phoenix Rising Founder

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    Thanks. I agree - unfortunately I cannot stick the Intro Page! (I do have copies :)) Anybody can edit - hopefully they will do judiciously :)
  5. Cort

    Cort Phoenix Rising Founder

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    I think we are coming up with better ones. There is a benefit to having a standardized questionnaire though - so I want to keep the ones that are good and then add the ones that we improve on

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