Study for people with cfs in Australia and Canada

[alias_sqbr]

Via the WA cfs society I heard about and have joined a Murdoch study on the use of internet by people with cfs, the plan is to get everyone involved in a Second Life support forum and see if it helps people. I have to do an hour long interview at the start as a baseline, and another in six months to see if it made any difference.

Anyway, this sounds like it could be a rewarding experience (I've always wanted to try out Second Life but never had an excuse :)) If any of you are interested and live in Australia or Canada let me know and I'll give you his email address (I was going to obfuscate it, but I'm never sure how clever bots are at untangling those things)

The resources are apparently available for anyone in Second Life, I'll post details and thoughts when I have them (on Monday)

I have a sneaky suspicion the Mike Kent(*) I'm in contact with is the unisfan Mike Kent, and am trying to remember if we ever met or I just heard his name a lot before I make a social faux pas :D

(*)nb the email address in his contact field there is broken, though the mobile number works

Comments

[lauredhel.livejournal.com]

I managed to get Second Life to work for me once or twice, to get to Gimpgirl stuff, then it kept failing (some sort of "region" error, whatever that means), and all attempts to FAQ, google, and trouble-shoot failed. Eventually I ran out of energy to try to make it work.


Also, any idea who's running this, what model of CFS causation they're working with, and what definition of "helps people" they're using?

[alias_sqbr]

Well if that happens to me that'll just be something different to report I guess :/

From the info sheet I was given:

Isolation, illness and the Internet: Exploring the possibility of a second life for sufferers of ME

The purpose of this research is to help answer the question: How does the Internet assist ME/Chronic Fatigue Syndrome sufferers in managing their illness, one characterized both by high levels of isolation and a type of cognitive impairment which makes computer use extremely challenging?

This will involve a number of separate phases over approximately 12 months:

1)Interviewing a number of individuals who suffer from ME/Chronic Fatigue Syndrome in Australia and Canada, to find out about how they use computers and the Internet.
2)The construction of a forum in the virtual world Second Life where participants can meet and discuss their conditions and experience and find and post information that they might find useful to share.
3)Conducting focus group interviews with participants in Second Life
4)Reinterviewing those involved to see how their use to technology changed while they were part of the project

The two names I've seen have been Kirsty Best and Mike Kent.

[baby-elvis.livejournal.com]

Yep, that's the UniSFA Mike Kent.

[alias_sqbr]

Righto! I didn't want to assume and feel silly :)

[strangedave.livejournal.com]

Yes, I've even heard him talk about this study.

[strangedave.livejournal.com]

Also, I'd be vaguely surprised if you have never met him at all, as he is my best friend and very regularly at parties at our place etc. On the other hand, it has been a long time since he was a regular attendee at Unisfa events, and he has never been a regular swancon goer etc. Oh, and his (not much used) lj is dr_mickey_k

[alias_sqbr]

He does look vaguely familiar. I suck at names. And faces. And personal details... :)

[the-s-guy.livejournal.com]

Would you believe Mike and I lived half a dozen blocks from each other, growing up? Do I get to say I knew him before he was famous? :)

(Not through Unisfa, either, although, wouldn't ya know it, I was a member of that too, once upon a time.)

Of course, I haven't seen him in, ooh, twenty years or so, but our Moms still regularly chat.

*clicks links*

Bloody hell, he's got a doctorate now?

[alias_sqbr]

*nods*

Waiiiiittt....Moms??

Are you secretly an American under witness protection pretending to be Australian? (complete with childhood background you oh-so-casually drop into conversation) If so your secret is safe with me.

[the-s-guy.livejournal.com]

Nah, I just tend to default to Americanisms on LJ when I'm not concentrating. :)

[stephbg.livejournal.com]

I know I should... but it sounds exhausting.

[alias_sqbr]

I think "I don't have the energy" is an entirely logical reason not to participate in a study about chronic fatigue. I'm only doing it because it sounds like something I might get something out of, and because they explicitly state that you can drop out at any time. On the other hand, I can't motivate myself to do all the tests you've been doing, even though there's a possibility they could find Something Important.