15 May 2008

ME/CFS Awareness Week

| saraj
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Possibly a little late but this week is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Week in NSW.

“Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) as it is more commonly known, is a chronic and disabling illness affecting the immune and central nervous systems. It is characterised by profound fatigue which is accentuated by physical and mental effort. It occurs in all sections of the community including children and adolescents. This can result in major disruption to education, social, physical and emotional development for many months or years.”

http://www.me-cfs.org.au/files/school_brochure.pdf

More information can be found on the NSW and ACT Support Group websites:
NSW – http://www.me-cfs.org.au/
ACT – http://www.mecfscanberra.org.au/index.html

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the nsw thing is relevant, thanks for posting. ignore them. they think they are cleverpants.

i’ve seen the nsw/act group’s blue ribbons being sold around the place before and when i’ve worn mine, people have often asked what it is for, and not understood what CFS is, or if they’ve heard of it, they have immediate cynical reactions to it. it can be a tough condition, and one that is easy to co-exist with heavy depression (sadness *nod to tap 😉 )
it sucks and without support and awareness from the general community (or some doctor/workplaces sometimes!) it can be even harder,because you have that guilt/insecurity that maybe you are making it up, or could try harder, or hide it completley, or just need to rest more, or eat more/less or whatever!

great to see there is a running campaign still. 🙂

CanberraResident6:32 pm 15 May 08

My observations.
Key word in title of post is “Awareness”.
Also, there is a reference to ACT CFS link.

It’s such a difficult condition to diagnose, so these links have been most useful.

Very clear post and most relevant to Canberra, thank you.

As a standing point of order, recognise when you are being baited, and DO NOT FEED THE TROLL.

The moment you give in, they feel a small twinge of validation as part of your brain dies.

thanks Duke 🙂 I just noticed the (Troublemaker) tag under my name! oops!!! Lived up to that today I guess 😉

saraj – don’t feed the trolls! Thank you for bringing this worthy initiative to our attention 🙂

Mælinar – You’ve missed the point entirely.

As the title of this post suggests – its about bringing awareness to ME/CFS – regardless of events happening in NSW.

Why can’t I bring attention to an initiative in another state to RiotACT readers?

Any publicity for the condition and increased community awareness has to be a good thing.

Next Support Group Meeting (Tuesday 6 May) – Generic Medication

saraj – I disagree. Now we know its not just a Sydneycentric event, and indirectly, that you know a little bit more than you revealed in your first post.

Where is the closest event to the ACT ? (if there are none being held in the ACT)

How would you see an ACT person getting involved in this event ?

*sign* as Ive seen happen to others many times, and now to muself. Members of this site seem to take great delight in moving to stifle others from contributing.

Mælinar, it may well be hosted by the NSW ME/CFS Society but I can assure events are being held outside of Sydney, right across NSW in fact.

Do you not think that a number of people who access this site, yourself included, know someone with CFS and might want to find out more information?

Congrats to you though for having CFS and still having the strength to use your computer on a regular basis to make others feel useless.

@WMD – I was responding to a post by tickboom, were you to read and comprehend what is actually going on.

Your post, on the topic of NSW only being 10 mins away is as relevant as my original post. The facts are that this is a NSW event, and it is being hosted from Chatswood in Sydney. I might even go as far to assert that the activity will not be conducted outside the Sydney basin, pending any actual evidence being presented here, of which, I note, you have not actually presented any yourself yet.

Keep on flapping, Mr missiles – although they seem a little more hollow than usual today.

Deadmandrinking3:29 pm 15 May 08

The fact that you had to tell people it’s funny…well, it should be obvious.

What I’m trying to say is that some topics relevant to NSW may also be relevant here. After all, the ACT is surrounded by NSW and nowhere within the ACT is that far from the NSW border.

Keyboard getting sticky?

What I wrote is funny, just like your jumping onto the bandwagon when I answered a question from Saraj. Its relevance, is as relevant as a NSW (Chatswood) hosted event in the ACT, as is its tenative link to the ACT via dropping in an ACT information resource.

WMD I note you are firing missiles again. flap flap flap.

Deadmandrinking2:38 pm 15 May 08

But NSW is so far away from the ACT! Like, a whole 10 minutes drive from Canberra!

Mael, that’s as may be. It doesn’t mean that what you wrote was funny.

Mael – Tourettes.

Saraj:

a. I have CFS.
b. The event is a NSW recognised event. This is an ACT focussed site.
c. If you don’t laugh, you cry. Refer to point a.

Why bother posting c&*p responses like those above? To show how humerous you think you are?

Without going into too much detail, a member of my family has been battling CFS for 12 years. To see a vibrant and energetic young woman reduced to being bed bound and dependent on others for her every need is heartbreaking.

Perhaps if this information allows one suffer, of their carer(s), to find information and support then the post was worthwhile.

Even if utterly exhausting for the rest of you.

I was interested to find that its impossible to have narcolepsy and tyrettes syndrome at the same time.

There went that plan for becoming a workplace a$$hole.

I was going to post a response earlier but I fell asleep at my keyboard!

*yawns*

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