1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

ME/CFS Community Profile Page

Discussion in 'Create A 'PatientsLikeUs' ME/CFS Treatment Program' started by Cort, Apr 27, 2010.

  1. Jenny

    Jenny Senior Member

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    JT - I can't see a CFS or ME questionnaire. This site is really weird - I really don't understand it. Why when you do the questionnaire on Lyme does it ask you about crop circles or whether you argue with your partner?!

    Jenny
     
  2. JT1024

    JT1024 Senior Member

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    I didn't see the CFS/ME questionnaire either. I queried all questions and only found ONE asking if you had been diagnosed with CFS.

    This site allows anyone to create questions. I agree a lot of the questions are bizarre but you can skip whatever you don't want to answer. I did!

    Perhaps a bunch of us should create CFS/ME specific questions and create a questionnaire. I think you can do it for free.....

    Got to run! I'll be investigating further when I can... ~ JT
     
  3. JT1024

    JT1024 Senior Member

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    Last night (early this morning), I was playing around on the www.patientslikeme.com website to view other communities, what data they capture, etc.

    I was shocked when I saw the HIV community for several reasons. While there are 2312 patients registered for the HIV community, only 386 allow their information to be viewed publicly (I don't blame anyone!).

    You are able to sort patients in many ways and one thing I found out was how many subtypes have been identified. There are so many subtypes identified and HIV came on the scene about the same time as CFS....it is really frustrating. Also, they capture CD4 counts and viral load. Some of the other diseases represented capture far more data than the FM/CFS community.

    I think displaying the stats on CFS/ME versus HIV and other well know diseases might grab more attention.

    I want to post more but have run out of time... more later...
     
  4. Cort

    Cort Phoenix Rising Founder

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    I agree Traitwise is very interesting. That's great you can do your own surveys - something we should definitely take advantage of.

    Here's another site that I have trouble getting into - its another online patient information effort - drilling down into one disease called -
    LAM. https://www.lamsight.org/about

    It espouses the benefits to researchers and patients of being able to access patient supplied data.

    I imagine these types of sites are going to be popping up over the internet over the next couple of years.
     
  5. Cort

    Cort Phoenix Rising Founder

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    We can really use more examples of system where patients are inputting information for research purposes or to find better treatments. If anyone has time to search diseases that would be great.

    Medigenesis is an autism project that is not completed yet. They did have a Biomedical Data Survey - medigenesis expands on that.

     
  6. Cort

    Cort Phoenix Rising Founder

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    I think we'll find them in diseases that effect a good number of people but are poorly understood? Where patient input is needed t obetter understand the disease...or in small diseases that aren't getting a lot of research and could use patient information to fill in the gaps

    Or in diseases with a long history of advocacy

    AID Health Tracker - https://secure.thebody.com/tracker/intro.html
     

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