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ME/CFS Centre in virtual world Second Life

Discussion in 'General ME/CFS News' started by shrewsbury, Apr 6, 2010.

  1. shrewsbury

    shrewsbury member

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    Kirsty Best to CO-CURE today

    [if: I saw an article about this recently. I think she might be doing research as well - maybe on whether the social needs of people with ME/CFS are met in part by the site?? I think she has a friend or family member with ME/CFS. I'll see if I can find the article.]

    ****ME/CFS Centre for Social Support now open in Second Life****

    Dr. Kirsty Best from Murdoch University has set up a Centre dedicated to people with ME/CFS in the virtual world Second Life.

    We invite all those with ME/CFS and their friends and family to use the Centre and attend our gatherings and events. We hold regular meetings in the Centre, where people with ME/CFS gather to find support, friendship and information. We also host visiting speakers, guided relaxation/meditation, and more. All you need to attend is a Second Life account, available for free. We suggest those with ME/CFS sign up through Virtual Ability: http://virtualability.org/signup.aspx

    Once you have an account and have downloaded Second Life, the Centre can be accessed through this URL: http://www.tinyurl/me-cfs All you need to do is open up the Second LIfe application on your computer, open up the URL in your web browser (http://www.tinyurl/me-cfs ), and then click "Teleport now" above the image of the Centre.

    You may want to visit our website (http://www.mecfscentre.org) even if you choose not to enter Second Life. We publish recordings of our visiting speakers, information about ME/CFS, and a calendar of events taking place in the Centre. Please feel free to join our mailing list to get updates on events and to read or contribute to discussions about ME/CFS (http://groups.google.com/group/mecfscentre).


    **More information**

    - To find out more, our website is: www.mecfscentre.org

    - Join our mailing list at: http://groups.google.com/group/mecfscentre (You need to create a Google account if you don't have one, or sign in with the account you currently have).

    - We have just started an ME/CFS lobbying/advocacy collaborative wiki at: http://mecfslobbying.wikispaces.com/

    - Take a virtual tour of the Centre here: http://www.youtube.com/watch?v=4OResI2xxJ8

    - Join the ME/CFS Centre group in Second Life (do a search for ME/CFS Centre once you are logged in and click Join. It's free)


    The director of the Centre is Dr. Kirsty Best of Murdoch University. Kirsty's avatar name is Kirsty Bearsfoot. Please contact or email her with any questions.

    --
     
  2. shrewsbury

    shrewsbury member

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    I so love the internet: here's the article I saw:

    Murdoch University: ME/CFS Support in Second Life

    Posted by Lowell Cremorne on March 31, 2010 View Comments

    This story appeared originally on Metaverse Health.

    In recent weeks, thanks to a health professional colleague, I became aware of a research project underway at Murdoch University, looking at the use of virtual worlds as a support mechanism for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Its an ARC funded, three-year project titled Isolation, illness and the Internet: Exploring the possibility of a second life for sufferers of ME.

    Chief Investigator for the research is Kirsty Best, a lecturer in Communication and Media Studies. She kindly spent some time explaining the research project and providing some insight on the wider issues faced by those with ME/CFS. There is also a further viewpoint after the Q&A section from Alex, an Australian living with ME/CFS who has been taking part in the project.

    [​IMG]
     
  3. Otis

    Otis SeƱor Mumbler

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    USA
    WOW. Amazing. I'll be checking this out.

    I too love the internet and remember when it was only capable of very rudimentary functions between universities.

    islandfinn I have no idea how you dig up all this stuff but thank you!

    Otis
     
  4. Koan

    Koan Be the change.

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    I nearly took part in their experiment but then the XMRV news hit and I knew I should not add an online activity to my already heavy schedule just keeping up with the news.

    I just took the virtual tour and what I found most interesting is that it is the kind of environment which, in real life, most of us would be either reluctant or unable to enter: enormous rooms, waaaay too much empty space with no place to lie down, most seating not suitable for OI, a long walk to everywhere even with the "teleporter", too much sun, too little lounging and even the meditation area has only sitting cushions where the virtual tour guide plops himself into a lotus and immediately reaches his arms above his head!!! I have to say that just watching this guy walk around was kinda exhausting :tongue:

    So, unless you imagine yourself well and lively, it's not an environment I would find welcoming.

    Interesting concept, though, must say.
     
  5. shrewsbury

    shrewsbury member

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    I got that sense too Koan - but it might work for those of us who are virtual gamers. Also heard that there's a fair bit of noise irritation, too much input at times.............

    Otis - Thanks, but I really do nothing except copy over. I subscribe to co-cure and have a couple google searches & free site subscriptions - everything just comes to me - I skim the titles, then scan the ones that look interesting and from a credible source - and copy over what I think others might be interested in (often not even being able to read the research/article). It makes it seem like I'm doing something, when I'm not really - and don't have to think much to do it!
     
  6. Koan

    Koan Be the change.

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    Hey If,

    I think they should provide some kind of totally cool cross between a Segway and a recumbent bike - a Segway that supports your upper body and lets you bend your legs - for getting around. And a shady, leafy, sun dappled but not sunny area near water - maybe on a riverbank - with hammocks and chaise lounges everywhere. AND, a small lake with lots and lots of inflatable mattresses on it - some doubles with integral shades so that two can bob along together without getting sunburned! And an enormous salt water swimming pool - half in shade, half in sun - for floating or swimming if you're able.
    :innocent1:

    ETA: If wrote
    What you just described is doing something!!!
     

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