Tania Puts In Sterling Effort At The 6th Australian Health and Research Medical Congress.

[taniaaust1]

Interesting indeed Tania, ( and very sad ) thanks; I saw Ian Hickie in the media recently but forget the jist of it now. I will watch out for him.

The Ian Hickie being refered too is often in the media.

 

[MishMash]

@taniaaust1
You did a great thing. Standing (or sleeping) there got much more attention than any of us writing letters to politicians, news media, blah blah.
A cut in HIV/AIDS research was announced last week here in the US, so a bunch of activists walked into a Senators office and stripped down naked. The reporters and photographers literally had a riot trying to get a shot. I'm not saying you should do this-- but dramatic spectacles mean much more than just words. Those docs may have walked past you, but some of them did not forget you.
I hope you didn't wear yourself out too much. Cheers!!

 

[taniaaust1]

A cut in HIV/AIDS research was announced last week here in the US, so a bunch of activists walked into a Senators office and stripped down naked. The reporters and photographers literally had a riot trying to get a shot.

If we did that.. Im sure it would be used against us to push the mental health issue views eg look at what those crazy ME/CFS patients who are in need of CBT are doing now.

I think we need to be far more careful then other illnesses who dont have a psychological illness view hanging over their heads. We need people to release that we are mostly a bunch of "normal" people and not "extremists" doing all kinds of crazy things including death threats. We need people able to relate to us to see our real situations and not that we are crazies.

But yeah if we didnt have the psych stuff hanging over this illness.. there is all kinds of things which could be done to bring attention to us. Maybe we should start having "sleep over" protests at places where we just all gather and lay about.. BYO mattress.. we need to find good ways to campaign which are suitable for our illness.
...................

On the subject of HIV advocacy.. I saw got some far out advocacy info on that in my letter box the other week.. I got a leaflet inviting me to a huge gay party in which it said a couple of members of parliment were supporting and then half way down page it talked about AIDS (it was all lies well the part about the MPs anyway and the highly inflated AIDS figures.. one in 9 gay males have HIV or AIDS.. I think was a lie as I dont think it would be true here).

Anyway.. it certainly got my attention... I was in shock that these 2 members of parliament were telling everyone to come to a gay party and making it sound like one really wasnt in the in group if one didnt go (actually I thought the leaflet came from the government at first). It took me a bit to realise that the group was using these gov peoples names without obviously getting their consent (one only realises that as there was no gov links at all on the invite). Anyway..whether it was that or not I dont know but then this week (a week later).. suddenly the Australia gov has decided to put more funding into HIV as apparently there was a protest going on over here about cut backs.

 

[MishMash]

It really worked in the 1980s in this country, with the AIDS epidemic. And the animal rights people really know how to get attention. Some brave ladies walked around in the buff, here, in a little town in Georgia USA. And all kinds of people walked up to them and said they respected their guts.

But I would not ask anybody to do anything to jeoparidize their futures.

 

[Little Bluestem]

Kudos. I think having one person there may have been just right. People are sometimes intimidated by a group. If they feel intimidated, they do not listen. Security might have kicked out a group.

I don't really see how they could have kicked you out for protesting. Sitting beside a sign with informational sheets to give to those who want one (when you were awake) does not seem to me to qualify as a protest. You were not even following people and trying to stuff the info sheets into their hands. I would call it an awareness campaign or an informational effort.

You have set an excellent example. I hope someone follows up at the next conference.

 

[Hope123]

Good job Tania! I hope you take it easy on yourself as long as you need.

And very good you got to talk to the organizer of the conference. Do follow-up.

 

[Sasha]

That's great stuff, Tania! And your posters were brilliant.

 

[Valentijn]

Here in Australia.. We so have at least two strong ME/CFS is a psych illness supporters

There's also a hospital in-patient program somewhere in Australia for children with ME and issues presumed to be similar by the doctors (psychological). Someone from the aussie forum (notcrazy.net) took her son there. The guy running the department is an asthma specialist, but also has strong feelings about "medically unexplained symptoms".

EDIT: The doctor's name is Donald Payne ( his beliefs are at http://www.tourhosts.com.au/archive/physiciansweek/pdf/Presentations/PAYNE.pdf ). The hospital is Princess Margaret in Perth, Western Australia. http://www.cahs.health.wa.gov.au/general/CAMHS/index.htm

Definitely firm believers in the psychosomatic model of ME/CFS.

 

[Merry]

taniaaust1, I'm very grateful to you. The bashing and ridicule of advocates by extremely negative and aggressive individuals that has been going on here at Phoenix Rising the last couple of weeks has left me discouraged, but your story is truly uplifting and inspiring.

 

[Merry]

Maybe the Australia culture fights injustice more..

Tania, you may very well be right.

 

[Nielk]

A great thing you did Tania! With no fanfare you took it upon yourself to be the organizer, the poster writer, the information gatherer and distributor, the lone demonstrator and our representative. A full one woman show! I'm so grateful for what you have done. A true hero indeed.

Thank you,
Nielk

 

[jimells]

Maybe we should start having "sleep over" protests at places where we just all gather and lay about.. BYO mattress..

Ya, a sleep-in, instead of a sit-in! Even *I* could do that!

 

[Sherrie]

You're such a trooper Tania, your falling asleep on the ground surely must've made an impact. You never know, some researchers maybe sitting back mulling it all over and reading up more about it.

My partner works in hospitals on medical gear and he came home surprised and excited the other week, when both his workmate and he came across a stand in the front foyer of the RAH on ME/CFS by the South Australian group handing out pamphlets and such.

 

[taniaaust1]

You're such a trooper Tania, your falling asleep on the ground surely must've made an impact. You never know, some researchers maybe sitting back mulling it all over and reading up more about it.

My partner works in hospitals on medical gear and he came home surprised and excited the other week, when both his workmate and he came across a stand in the front foyer of the RAH on ME/CFS by the South Australian group handing out pamphlets and such.

Wow!!! Its so great to hear that SA ME/CFS society members are getting out there and doing that where we need to be seen.

 

[Sean]

Big thanks for this work, Tania.

Hickie and Lloyd are real problems for us Aussies. I suspect that the appalling 1997 draft of the Australian Clinical Guidelines for CFS was very much Hickie's work.

 

[HTree]

Thank you Tania!!