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Update
Nov 19, 2005 16:35:13 GMT 8
Post by Damien Tonkin on Nov 19, 2005 16:35:13 GMT 8
19 November 2005
I've added a "what's new section" to the site (this much should be obvious) so that we can keep track of how far we've come. I've also added a "getting to know you" board in an attempt to get people talking to each other as opposed to just talking to me, I'll put in a questionnaire to get the ball rolling favourite film(s) best and worst thing about cfs that kind of thing, I'm also going to add a page to the media section about Linda's book.
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Update
Feb 7, 2006 0:46:14 GMT 8
Post by Damien Tonkin on Feb 7, 2006 0:46:14 GMT 8
7th of February 2006 I've been meaning for months to add a questionnaire to the 'getting to know you' section and have now done so, the purpose of this is to get people to interact on a more personal level and allow them discuss matters of mutual interest. The questionnaire is located here: damientonkin.proboards57.com/index.cgi?board=getting2knowu&action=display&thread=1139244802I'm starting small but will be adding more questions in due course To participate simply post your reply on the same board as the questions, you may skip any question you wish or even add your own, have fun.
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Update
May 10, 2006 11:13:11 GMT 8
Post by Damien Tonkin on May 10, 2006 11:13:11 GMT 8
10th May 2006
Due to recent troll activity and my current health limiting my ability to maintain this forum I have limited posting to registered members, guests will still be fully able to view the boards and registering is free and painless. If anyone would like to help with the administration of this website please let me know.
P.S. May 12th is international ME/CFS awareness day.
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Update
Jun 15, 2009 5:17:28 GMT 8
Post by Damien Tonkin on Jun 15, 2009 5:17:28 GMT 8
15 June 2009
Okay so it's been a good long while since my last update. I got sicker and had to concentrate on me for a while (not ME just me). In the meantime I managed to get into university which is no mean feat for a high school dropout, so I’ve got plenty of tips and tricks there.
When my sister first started Chrysalis people said that she would come up with ideas and everyone else would nod, now I know what they meant. In the past this website has failed because everyone was talking to me, not each other and I was too sick to keep talking. With my absence the website has fallen into disuse, to prevent this occurrence in the future we need to turn this into more of a community and less of a autocracy, in the past I feel I’ve presented myself as some sort of all knowing leader, which sort of casting against type so if it’s alright with everyone I'll just go back to being me.
Chrysalis has been in existence in one form or another for over ten years now and I am determined that it not fall by the wayside. There is no other community I am aware of that does what we do, certainly not any in WA. Chrysalis is about getting together eating junk food and just being ordinary kids without anybody judging us for what we can and can’t do.
You’ll notice that I’ve made some cosmetic changes to the website including a spiffy new letterhead and a completely new logo. I’ll shortly be starting a facebook group so that we can keep in touch without expending too much energy. I think we need to be able to send out distress signals so that if you’re feeling isolated and lonely everybody can come running.
If anybody would like to help or take part please let me know.
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Update
Jun 27, 2009 14:44:44 GMT 8
Post by Damien Tonkin on Jun 27, 2009 14:44:44 GMT 8
I should probably talk a little more about who we are and what we do and stuff like that. We’re (sort of) a splinter group of the ME/CFS Society of WA ( www.mecfswa.org.au/) We are also associated with SIDE, The School of Isolated and Distance Education i.e. school off the air ( www.side.wa.edu.au/) which deals with a lot of ME/CFS affected kids. Although we haven’t had that much contact with them lately, since (as far as I know) they’re still going strong and we’re kind of on our backs with our legs waving in the air that might change. Traditionally they do all the important stuff and we just sit around chatting and eating chocolate, which is a very underrated and important activity. We used to have meetings a couple of times a year (a lot of people are put off by the term “meeting” thinking it sounds too serious but as I said chatting, eating chocolate, so call it a gathering, hang out session, whatever, it’s not like there’s a podium and a itinerary). Occasionally we discuss ways to raise funds or awareness of ME/CFS research, but mostly chocolate, photo’s, craziness. Hopefully we’ll start doing that again as soon as we have enough members, (i.e. more than two). Our age group ranges from sort of early teens to late twenties. Because a lot of our members need a lift to the meetings (gatherings, hootenannies, whatever) the parents often go off and have a coffee together and talk about what it’s like to be a carer for a chronically ill child/teen so we end up with a sort of double barrelled support group, which is nice. We’re mostly ME/CFS centric but we’re not that choosy especially since CFS is only an umbrella term anyway, basically if you have a chronic illness and you think you’d get something out of it your welcome to give us a try although if you have cancer or something you’ll probably find there are other groups more tailored to your needs and you know better funded but as I say everyone’s welcome, if you are a friend or family member who would like to take part go for it. I've reset the boards so that guests can reply to threads. I thought we'd try the user friendly approach for a while, but please remember that this is a non-profit social outlet for sick kids and their families so I take a very dim view of unscrupulous people who try to use these boards as free advertising space. Now don’t be put off by that statement I’m only talking about the most blatant abuse of this community everything which would come up in everyday conversation is fine, when people do the wrong thing it’s deliberate and very obvious. In the six months that this board was inactive someone filled every page with ads for LCD monitors, so you can see where this is coming from.
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Update
Jun 28, 2009 11:29:55 GMT 8
Post by Damien Tonkin on Jun 28, 2009 11:29:55 GMT 8
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