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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Isolation and ME/CFS Study

Discussion in 'Active Clinical Studies' started by Cort, Oct 6, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Murdoch University is currently undertaking new research into how virtual worlds on the Internet, such as Second Life can be used to help people with ME/CFS, particularly in overcoming some of the isolation that is often associated with these conditions, as well as providing a place where people can meet others, and share information and support.

    We are looking for volunteers who would be willing to participate in Canada and Australia. This would involve two interviews either over the phone or through Skype with one of our researchers, approximately six months apart, as well as participating in a focus group discussion to be held in Second Life in which other participants in the study from both Australia and Canada would take part.

    At the end of the study all participants will be able to maintain their free Second Life account and continue to have access to all the online facilities being constructed for this study on Murdoch Universitys Second Life Campus.

    If you are interested in participating please contact Dr Mike Kent via email at <mike.kent@cultware.com> or on 0412 442 808.


    What are we trying to find out?

    This research is looking at the potential for virtual worlds such as Second Life to help ease the isolation that is often associated with conditions such as ME/CFS. There is an existing ME/CFS support group in Second Life that speaks very highly of the positive effect participation in Second Life has had on their lives, and this study is looking at how these experiences might to transferable to the broader ME/CFS community.

    Who are we looking for?

    We are looking for volunteers who currently have ME/CFS and are connected to the Internet and who would be interested in participating in this study. You would need to have a broadband connection of some sort and a computer capable of running the Second Life Software (generally a computer that was purchased in the last 3 or 4 years).

    What would you be asked to do?

    There would be two interviews that take place either over the phone or through the Internet using Skype that would be arranged approximately six months apart at your convenience as well as participation in a focus group with other people in the study that would be conducted in Second Life.

    What is Second Life?

    Second Life is a virtual world accessed through the Internet. It creates a 3D virtual world, where people are able to virtually move around and interact with the world and with each other. Murdoch University has developed its own campus on Second Life, with a dedicated building for this research.

    Who is conducting this research?

    This research is being conducted by Murdoch University through funding from the Australia Research Council. The Chief Investigator in this project is Dr Kirsty Best. Dr Best has been heavily involved in the ME/CFS support community in her native Canada before moving to Australia and maintains strong links with that organisation. Dr Mike Kent is the researcher with responsibility for the Australian based division of this project.

    I am currently running a research project in Canada and Australia that is looking at the potential for the virtual world Second Life to help ease the isolation frequently experienced by people with ME/CFS. I was wondering if you would mind forwarding a request for volunteers in those two countries through your site? We have constructed a resource centre in Second Life for ME/CFS on Murdoch Universities virtual campus, that we are hoping will continue as a resource once this study is completed. I have attached below a suggested letter to be posted if that would be OK. Please feel free to contact me if you would like any further information.

    Your faithfully,

    Mike

    Dr Mike Kent
    Critical Digital Hub
    The Popular Culture Collective
    www.popularculturecollective.com
     
  2. Koan

    Koan Be the change.

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    Well, this looks like it might be fun. I used to be involved in "media" so it would be interesting to take part in a new media experiment.

    Must say, there's something about "virtual" living that is vaguely disturbing... but, I've emailed them :p .

    Thanks Cort!
     
  3. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    I hope it works out - I don't really know anything about it. I do think that isolation must just be such an increased burden. We are social creatures after all. Of course some isolation is absolutely necessary for healing but we do need that interaction. Please let us know what happens.
     
  4. Koan

    Koan Be the change.

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    At first glance, SL - a place where people live virtual lives, go shopping (?!) for virtual things and built virtual castles on virtual islands in the sky while making virtual friends - is kinda creepy in a very interesting way - if that makes sense.

    They seem to be looking for practical uses for the community like virtual meetings and this endeavor. I get the feeling that it is mostly kids at the moment but I really don't know.

    Anyway, I contacted them, I've heard from them and I'm going to do it. I'm interested in how technology will be used to link people in the future. It has certainly served me well in the present!

    I'll keep you posted.
    Koan
     
  5. Koan

    Koan Be the change.

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    I've changed my mind about this. I don't know what I was thinking.

    I have a stack of emails from people close to me to which I struggle to respond.

    I have only glanced at facebook since the WPI info broke.

    So, I won't be keeping you posted.

    What was I thinking?!

    Koan
     
  6. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    Koan,

    I get it! I've done the same thing. Our problem I think is that once our lives are isolated it's generally because we have almost no energy to do anything and thus we are behind on everything. It would be nice to have more Up Time and it can be hard to remember how restricted some of us are.

    Hugs,
    tee
     
  7. Koan

    Koan Be the change.

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    Hey TEE!

    yeah. I don't need access to more virtual world; I need better access to the real world.

    It's also very interesting how much being broke contributes to isolation. I just took a shot at explaining what I mean but can't. It was about the impossibility of buses and the trade-off between doing laundry and actually wearing the clean clothes... and maybe something about how it becomes harder and harder as you fall further behind.

    Not sure. Zzzzzzt zzzzt zt zzzzzzzzzzzzzt!

    Nice to see you, Tee!

    Koan aka Rafiki
     
  8. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    Koan

    OMG! I knew it! lol I thought you had to be Rafiki if you were anyone from PH. :) Very cool. You are pretty, I like your picture.

    I'm so happy you're here and we get to benefit from your calming presence.

    Hugs,
    tee
     
  9. Koan

    Koan Be the change.

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    Hey Tee,

    Yes, it's me. I'm glad you like my pic. The famous "off leash dog beach", that I'm always talking about, and the lake are in the background. And, that's a leash around my neck.

    I don't get down there as often as I would like - it is a whole block away, after all - but when I do, I like to meditate while I walk and that's pretty much how I look while I do.

    I'm really happy to see you here. It's a very healthy place and a very exciting time!

    peace out,
    Koan
     

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