Media interest

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

Media interest

Postby wonky1 » Mon Nov 23, 2009 9:53 am

It's all happening, perhaps.
Yesterday I emailed the fabulous w5 news report to lots of British news organisations and reporters. Today I was contacted by the BBC who had loads of questions for me about CCSVI and my imminent treatment.. It's about time CCSVI caused an avalanche of interest this side of the pond.
Fingers crossed.
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Postby Mutley » Mon Nov 23, 2009 10:13 am

That's great wonky, good work! I'll be watching with interest.

Mark.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby jimmylegs » Mon Nov 23, 2009 10:30 am

good for you wonk :)
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Postby LR1234 » Mon Nov 23, 2009 10:32 am

Well Done Wonky!! I am so pleased you got a response!

I did that too yesterday but no one got back to me:( You obviously write a better e-mail than me:))
I did get an automated response from Sky news but I don't think that counts lol!
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Postby whyRwehere » Mon Nov 23, 2009 11:51 am

I contacted Case Notes and the Health Editors of the BBC news site AGES ago and Case Notes at least acknowledged the information, but that was it.
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Postby LR1234 » Mon Nov 23, 2009 12:04 pm

I contacted Case notes too (on the advice of my friend who listens to it) I have never heard it before. I sent them the link to the W5 programme, I have not got a response yet.

If anyone does contact me back I am only going to pass it on to one of the other UKers as I have not had the procedure yet and am still in the "hiding my MS" phase
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zamboni's publication

Postby jean-la-grenouille » Mon Nov 23, 2009 2:02 pm

Hi,

Any news about Zamboni's last publication? (has it been released? Tomorrow?...)

:-)

Jean
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Postby Mutley » Mon Nov 23, 2009 2:08 pm

Yes, tomorrow I think
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby wonky1 » Tue Nov 24, 2009 11:16 am

O.K. Following my chat yesterday with Michelle Roberts the BBC health correspondent. She has written a story about CCSVI and my trip to see Dr Simka tomorrow. It will be published online on the BBC news site, I guess it will be in the health bit. It's available from midnight GMT (English time)
Unfortunately I'm gonna miss it because I'm off to bed soon, early flight.
Hope it's cool.
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Postby ozarkcanoer » Tue Nov 24, 2009 11:28 am

wonkey1... That's greate !!
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Postby Mutley » Tue Nov 24, 2009 11:42 am

That's brilliant Wonky1. Good luck with the trip tomorrow, keep us posted.

All the best!
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby LR1234 » Tue Nov 24, 2009 11:59 am

Nice one Wonky! I am looking forward to hearing of your Poland experience...keep us posted xx
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Postby Pepe » Tue Nov 24, 2009 11:59 am

Well done, Wonky!!! Best wishes!!!
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Postby gibbledygook » Tue Nov 24, 2009 12:45 pm

Good luck Wonky! Hope you can immediately update the BBC website with improvements!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Filmmaker » Tue Nov 24, 2009 12:51 pm

Hi all
Does anybody know which French media would be interested in this? I know that France has a great medical system and I feel they would be very qualified for this, but we also definitely need the French speaking world to be aware of the news...And they are great fighters, so it would harder for the Big Pharma to hide anything:-)
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