CCSVI - Aussie Action!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

hope u got my response!

Postby nico » Wed Sep 22, 2010 12:14 am

hi val, l responded a couple of weeks ago - pls check your pms! cheers, nico
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Postby CureOrBust » Thu Sep 23, 2010 4:21 am

I remember seeing this a while ago, but just skimmed over it, and while looking on their web site for news on FTY720, I came across it again.

Does anyone know anything about this, that is not already published on the web site?
http://www.msra.org.au/abnormal-venous-drainage-brain-and-spinal-cord-patients-ms
Abnormal venous drainage of the brain and spinal cord in patients with MS Share
InvestigatorsA/Prof Brian Chambers, Austin Hospital
Ms Heather Cameron, Austin Health (Sonographer)
Ms Jayne Chambers, Austin Health (Sonographer)
Prof Richard Macdonell, Austin Health

Funding
$35,000 for 2010
They are running out of time to spend that.

http://www.msra.org.au/recruitment-beginsIm sure I saw this a while ago.

The study description.
http://www.msra.org.au/files/msra/docs/SPOTLIGHT%20on%20MSRA%20Funded%20CCSVI%20Research%20Aug%202010.pdf

I lurve the quote at the end of this page...
http://www.msra.org.au/next-20-article-ccsvi-and-ms
In the meantime, People with MS who have questions regarding CCSVI and associated treatments are encouraged to seek the advice of their neurologist.
i.e. don't bug us...
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austin trial

Postby hwebb » Thu Sep 23, 2010 1:46 pm

there have been updates about this on the CCSVI Australia Facebook Page. The "trial" (ie: doppler training session) is still going ahead. They will only be accepting patients with no outward signs of disability.

hwebb
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Vein of Hope

Postby hwebb » Wed Oct 06, 2010 12:00 am

an interview of Kerri, for the Australian Doctor magazine:

http://www.australiandoctor.com.au/news/b2/0c06c6b2.asp

Helen
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Postby MSmama » Wed Oct 06, 2010 11:18 am

An Outstanding interview- Hope someone on TV will see value in the story and run with it.
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Postby Downunder » Mon Nov 01, 2010 5:22 pm

From Kerri on the facebook page;

ATTENTION ALL MELBOURNE MSERS. Please clear you diaries for Saturday 13th November. We are planning a creative demonstration to raise awareness of CCSVI and need all the support we can gather. Please register your interest to Kerri@ccsvi.ms and we will forward details soon.

Time for action.

For those who don't read facebook, just go to;

http://www.facebook.com/CCSVIAUSTRALIA

you don't need to be a member, it's an open page.
Jennifer
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Postby Downunder » Tue Nov 02, 2010 5:35 pm

I'm going to bump this to the top every day to make sure it's not missed.

We need you Melbournians.

Jennifer
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I'll be there :)

Postby hwebb » Thu Nov 04, 2010 5:47 pm

the group is growing - lots of respondents expressing interest in coming. Can't wait !

H.
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Postby Downunder » Thu Nov 04, 2010 6:49 pm

From Kerri on facebook:

MELBOURNE CCSVI FLASH MOB! SATURDAY 13th NOVEMBER, 1.00pm, Bourke Street Mall. We will be holding a brief demonstration to bang our drum to raise awareness for CCSVI. We will have a media presence and need as much participants as possible to see how long a 'human' vein we can make through the heart of our city . Please register your interest (if you haven't already) to kerri@ccsvi.ms
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Postby Downunder » Sat Nov 06, 2010 6:01 pm

MELBOURNE CCSVI FLASH MOB! SATURDAY 13th NOVEMBER, 1.00pm, Bourke Street Mall.
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Postby Downunder » Sun Nov 07, 2010 5:26 pm

bump
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Postby Downunder » Mon Nov 08, 2010 6:15 pm

CCSVI MELBOURNE FLASH MOB
13TH NOVEMBER 2010
12.00noon Pre-event meet at City Square, cnr Swanston and Collins Streets
12:50pm Flash Mob circulates amongst the general public in Bourke Street Mall.
1:00pm Drum begins to signal start of Flash Mob.
What is a Flash Mob?:
A flash mob is a large group of people who assemble suddenly in a public place, perform an unusual act for a brief time, then quickly disperse. The term flash mob is generally applied to gatherings organized via telecommunications, social media and viral emails.
The bystanders watch wondering what the group is doing and why. Our aim isn’t solely to convince people at the Mall to understand our cause (although there may be interest). Our aim is to gain the attention of the media, in order to convey our message. Television and print media have been invited to the event, and we will create a video for upload to the internet.
Brief Description:
Our presentation will be simple and communicate the struggle people with Multiple Sclerosis have to obtain testing and treatment for Chronic Cerebrospinal Venous Insufficiency (CCSVI). Our presentation highlights the blockages we encounter when trying to access treatment. At a high level, these include the dependence of Neurologists on Pharmaceutical treatments for MS, lack of funding directed towards non drug-based therapies, and medical politics (red tape) as hospitals withhold treatment from people with MS, after misguidance from neurologists. The presentation ends with a sense of hope which is represented by the blue balloon.
What we are asking you to do?
Please be circulating around Bourke Street Mall by 12:50 with your blue t-shirt covered if possible. At 1:00 there will be a drum played at the Swanston Street end to gain attention. We will then begin to form a line from the Swanston Street end so just join the line from wherever you are. As the line slowly builds we will weave through the crowd past DJs and Myer to the 'public purse' sculpture. You may have someone dressed as a doctor offer you medication so just wave them away if they approach you. We will stop at the public purse (this is a 'blockage' and represents research dollars). The purse will have red tape strewn across it (the red tape represents the hospital politics and infighting between neurology and radiology, etc). On the other side of the purse we have two people dressed as doctors (Vascular Radiologists!). They will disrobe from their white coats, dismantle the red tape and walk around to the front of the purse and start to hand each blue person a blue balloon (the balloon represents the angioplasty treatment and is a symbol of hope and freedom). We then have brochures that can be given to anyone who is curious about what we have just done. You can stay and do this for as long or as little as your choose as this is officially the end of the event.
We may well arrange a place nearby to re-connect afterwards for those who want to.
Things you need to know:
The Myer Christmas Parade is on that same day. It will run down Bourke Street from 11:00-12:30 so please be aware it will be busy in town. We see this is a good thing as there will be plenty of media filming the parade and plenty of spectators – we may just need to be flexible and should the Mall be blocked we’ll approach the public purse from Elizabeth Street rather than the Swanston end. (This will be confirmed when we meet at the City Square at 12:00). Should the Mall be impossible, plan B will be Federation Square. We will confirm beforehand when we meet at the City Square.
We have purchased 100 blue t-shirts in various sizes and encourage you to wear one so we all look as uniform as possible. They cost $5 each and we’ll have them available from 12:00 at the city square.
** Toilets are located at the in the GPO building behind the ‘public purse’ sculpture. Disabled toilets are located in “The Walk” arcade, directly off the Bourke St Mall.**

Thanks for your willingness to participate.
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Postby Downunder » Tue Nov 09, 2010 4:47 pm

bump
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Postby CureOrBust » Mon Nov 29, 2010 4:00 am

Has there been any visible movement in Australia? Further media coverage? has the Sunday programme been scheduled yet?

Has anyone found a neuro here that is open to this concept? or at least willing to check for venous problems?
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Aussie update

Postby hwebb » Mon Nov 29, 2010 8:30 pm

There has been an article in the "Australian Doctor' magazine ...a weekly read by GPs. There has been a FlashMob. The CCSVI story on the "Sunday" program will not air this year. Zamboni is visiting in early April.

There is talk the trial at The Alfred is not too far from being approved.
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