Discussion in 'General ME/CFS News' started by Googsta, May 3, 2012.
Nice press release, will try to tune in to the radio spot tonight.
Wow.. they are getting busy. I applaud them and all the volunteers for that.
Its so great to hear that they actually got more going to the ME/CFS Medical Seminar then they anticipated.
**Im wondering if anyone else cant open the registration form or their link or is it just my computer?**
Im having the same issue with the swimming media release one.
The registration form works for me Tania, it's in .docx ms word format. Do you have a fairly recent version of MS Word?
Just over ten minutes until the radio spot guys...
I sure hope I was the only one who wasted my time & energy listening in. VERY dissapointing.
In fact, I'm so teed off I feel like sending ME/CFS Australia a scathing email.
CFS got a brief mention maybe 4 minutes, the main part of the story was talking about Linley Frame's swimming career & how she is back to international level despite STILL HAVING CFS.
I am so peeved.
Email to ME/CFS Australia, firstname.lastname@example.org
Not my best work, I am just so angry!!!! I can't think straight.
I encourage other members to complain to the society, on the FB page etc
I am so sick of these societies doing more harm than good, I'd rather give my money to PR or some other group.
In my book, they are doing far more harm than good.
Ah crap, I just noticed all the spelling errors etc
It was a bit of a wasted opportunity hey. It came across as though she just "pushed though it" and thus got fit again, which is not typical at all in this illness.
ME/CFS group in Queensland would be nice, there is a web site but it doesnt look like it has changed in years, nothing very interactive on there site????
Definately a wasted opportunity Adster.
It probably sounds a bit ungrateful to others, but these guys have taken on this role. They have a responsibility to at least not misrepresent our illness in the media. Whenever I have paid membership to many varied organisations in the past I have also had a right to voice any concerns & offer input. I think that is only fair. Just for the record, I've never felt the need to complain until now.
Is this really the best they could come up with for awareness week?? I'm sure they could have found one of the higher rating radio programs to do a spot, maybe a follow-up on 3AW after they were awarded the $5000 a few months back.
Or what about one of the morning tv shows? They do spots on rare conditions all the time (not that ours is rare).
The big concern is their choice of spokesperson IMO. I have spoken to some amazing young people who have M.E, why does it always have to be a sportsperson and/or someone who is back to near normal functioning? Obviously someone bedridden would not be a practical choice but there are others who are suffering that manage to get out & about.
I know a young woman in Melbourne who would be great. She had to have a pacemaker fitted a while back but she does Riding For the Disabled, she's writing a book, which she plans to turn into a movie, she writes for Emerge, moderates the ME/CFS chat room, is exceptionally talented at photography & the arts etc.
She struggles like the rest of us, uses a wheelchair, can't sit upright very long, needs oxygen after riding (RDA).
Hey Heaps, I remember Ash on NC saying there was little in the way of support in QLD. It's strange considering most of the Aussies here are sunshine kids
I didn't have time to listen in. Sounded disappointing...
Being able to swim while having CFS/ME is not exactly typical...
"You too can recover from being gay/black/jew or having ME! We can WHITEWASH YOU!"
IE, the media always spin the "you can recover, it's not that bad, just exercise, arbeit macht frei!" load of wicked bullsh*t and based off quackery/bigotry/incredibly ignorant garbage.
*spits in anger*
Just to confuse and divert the "sheeple" from getting "upset" about the abuse, deaths and epidemic of ME sweeping the world, so they ALWAYS do crap like this, showing some fit beautiful healthy perosn who "was cured by exercise!" instead of what the illness is REALLY like.
"Just ignore the little man behind the curtain, sheeple! Keep drinking your Korporate Kool Aid, and stay asleep!"
No way in hell you can be a competitive athlete AND have ME.
Gentle swimming with "light" ME, sure, that's possible and posisbly good for thsoe who can (not "GET" crap, but general health and for pleasure), but not serious stuff. Swimming = horizontal, body supported so probably a good thing for those of us who could do it.
Ive no idea what Ive got or even how to find out. Im not very computer literate
sighs.. Ive voiced my distaste at all the minor ME/CFS stuff which is made public before .. the very sick group is so little heard and that group needs to be being heard about much more, the public should be being told how sick this illness is actually making some.
This is so much why I wish there was society which was only a ME one in Australia, I hate CFS and ME combined. If I well enough, I'd try to start one up myself... all I can do is try to support associations which dont always seem to be supporting people like me, cause there is no others in Australia.
Googsta.. if you a member.. you should... if you are a member the org should be supporting its members.
Last time I knocked one of the Aussie ME/CFS association.. someone tried to do a personal attack on me..but as a member who pays fees.... I felt like I had every right to say I wasnt happy with what was coming out of the org.
If to many members are voicing displeasure maybe they will get others to do media interviews in future on how serious this illness is for them. If Im happy with an org, I'll voice my happiness.. if im not.. well I'll voice that.
I think many of us Aussies with more severe cases.. are displeased. If I was well enough to get to meetings... I'd would of tried to get on their board, it sucks, I cant even get to their meetings.
We get the same kind of stuff in the ME/CFS journals the Aussie Associations put out.
I did Tania, thanks for your support. I wonder if I'll get a response.....either way, it's not the first time they have screwed up big time so they've lost my support.
That upset me far more last night than anything Wessley has ever said.
DAMN STRAIGHT Silver, we are on the same page I was able to swim after my first two relapses but not since, that's a bloody far cry from national or internation competitive level.
I dont fault them at all for getting on low rating radio show.. I was very happy they had got an opportuntity to have someone speak on the radio for awareness week.
Its the spokesperson thou... we (those who have had this illness long term and severe) are all sick of the public believing that most of us have an illness which can just be recovered from. That is a concept which needs to be shifted about ME/CFS not added too!! I dont understand why our ME/CFS orgs keep doing that to us.
Ash has done a lot for Queenland and I know didnt have a lot in the way of support. (Ash was running or still runs a support group towards the top end of Queensland).
Googsta.. we are in a no win situation really with our orgs supporting that this illness isnt that severe.
If all the severe ones or those with ME dont join or drop out (I dropped out as a member for a while after an article in Emerge upset me.. it was an article by Lloyd which mentioned CBT).. it will only leave those with more minor kind of ME/CFS in the orgs and no one much complaining what they are doing to the rest of us.
After the bad article in Emerge, I only joined back with the SA assoc after they stopped putting out that Emerge to their members and started putting out the Talking Point (the SA ME/CFS journal) again.
Actually Im having a serious think about things now.. is there anyway a group of us could set up a ME org for Australia? I'd be in on it. Im so so fed up with the Aussie org trivalising it, we cant hope with the way they are being, for them to be educating public on what many of us experience. They are actually being harmful.
We need an Australian ME society with goal to focus on ME and how serious it can be and the issues ME causes, even England has a couple of proper ME orgs while here in Aust.. we have no-one representing ME
eg I dont want to be reading about those who ONLY have FM and not ME in my orgs ME/CFS journal.. its like chalk and cheese
Maybe if a few of us worked out how to set a new org up, it would grow. The current orgs probably have quite a few members not happy with what is going on. It could help get ME to be seen as different to CFS in Australia. If we were speaking for an org, we'd have more hope of getting our stories public etc.
If we had an org.. we could make sure any money raised was going to ME and not CFS.
I share your frustration with the Associations here in Australia, but I'm not sure the answer is to simply distinguish between CFS and ME - there us too much overlap, some Drs simply see them as the same thing.
But I do agree a better message needs to be sent. A swimmer with CFS/Me still able to compete is bit like suggesting skin cancer is a good representation of all cancers.
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I watched a seminar by Dr Lapp (I think) where he said all the top specialists had agreed to call the disease ME but they still needed the CFS as most of the research was under that banner. We can't just drop it unfortunately.
But we are on the way, that's the important thing.
I refuse to use the term unless it's absolutely necessary, then I switch to ME & they generally catch on. Plus I've also found it upsets our American family too, they don't have the M.E definition which really stinks.
And the U.K has embraced the name M.E yet they think it's physchiatric.
Thanks for that info on Ash Tania, I didn't know that, sly dog
As for starting our own org, sounds good. But I really don't think anyone here is in a state of health where they should take on that kind of responsibility. I don't mean to rain on your parade, I share the frustration. But we must also put our own health & well-being first.
Don't underestimate the power of an individual either. People like .....argh, Sophia Mirza's mum have made huge differences in the public eye.
I hope I'm making sense!
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