Bringing Liberation to the UK

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

Postby GuRu » Mon Jan 11, 2010 4:04 pm

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Daily Mail

Postby Dovechick » Mon Jan 11, 2010 4:56 pm

That is a good piece of news. At last a high circulation paper publishes a story about CCSVI but typical Mail treatment of a serious matter. Not impressed with some of their pictures. Thanks Guru for giving us a heads up.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Watch this video

Postby Dovechick » Mon Jan 11, 2010 5:19 pm

HKintheUK of the MS-CCSVI-UK fan page on Facebook made this video to help us make history....
Worth a watch:
http://www.youtube.com/watch?v=EZmk2ZSqkPc
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Making History!!

Postby Badger » Tue Jan 12, 2010 2:17 am

:D :D :D :D :D :D That youtube link is very good.!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Glasgow local news.

Postby Badger » Tue Jan 12, 2010 2:23 am

This has been the only article in the newspapers north of the border:

http://www.eveningtimes.co.uk/news/edit ... r-1.987654
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newspapers

Postby Dovechick » Tue Jan 12, 2010 2:40 am

Badger, it has pipped the Scotsman to the post, and the are usually quick on the uptake with MS stories, so well done the Evening Times. I've commented on an MS story in the Scotsman but whether they take it up or not is another question. I do have a Scottish surname but I live in the south of England...
I'm in the process of writing a press release which I will send them...

I think I will go and post the video as a new thread, to get more people to see it.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby colmmc » Wed Jan 13, 2010 11:43 am

Just an update on the petition.
1101 names at 6.30pm wed

keep up the good work and keep posting the link

http://petitions.number10.gov.uk/CCSVINOW/?showall=1

thanks
colmmc
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Postby acol » Fri Jan 15, 2010 12:13 pm

To my embarrassment I have just been catching up on all the posts on this marvellous thread. Congratulations to all those people who are working hard to raise the awareness of people in the UK.

I have posted an update re my efforts to get the procedure carried out in the UK under our NHS procedure http://www.thisisms.com/ftopict-8446.html
- blissfully unaware that this is now the more appropriate thread. On reading this thread I see that I have something in common with DippyD. I wonder how you are getting on? Not sure which part of the country you are from but it would be interesting to share experiences. My radiologist (who is very experienced) was new to this procedure and she was uncertain where I could get an MRV. These tests may be mainstream in some parts of the country but not where I come from!
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We are beiginning to get heard!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Postby Badger » Sun Jan 17, 2010 2:43 am

http://www.mirror.co.uk/news/top-storie ... -21973347/

This is just the beginning. I have been contacting all of my local press and media but they don't want to know.

Sorry to say I told you so......................

:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Postby colmmc » Fri Jan 22, 2010 12:05 pm

Just had a photographer from the Manchester Evening News round to take some pics to go with the story their going to run about th petition ect
It at 1738 now but its been a bit slow today,So can I ask everyone to give it a push
Thanks.

colmmc


http://petitions.number10.gov.uk/CCSVINOW/
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manchester evening news

Postby Dovechick » Fri Jan 22, 2010 1:41 pm

Well done Colm, come and tell us all about it as www.ms-ccsvi-uk.org
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby Luvsadonut » Wed Feb 10, 2010 1:49 am

I am meeting with a MP tonight who is sort of
a long friend. I will ask if he personally knows the
MPs who suffer with MS and if so do they know
about CCSVI and if so are they doing anything about it
, any other ideas?
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MPs with MS

Postby Dovechick » Wed Feb 10, 2010 3:29 am

we have a list of MPs with MS or with family with MS, if you email me at my address, at bottom of post I will send info.
Michele
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby sweetpea » Wed Feb 10, 2010 3:39 am

Just a small point re costs to the NHS of people having MS. The government gives a budget to each local PCT (Primary Care Team). The PCT then carves the money up. Hospitals have agreements with PCTs and charge them for individual consultations that they have had with patients. PCTs also pay for treatments and drugs. My point is that Neurologists and hosptals won't care about costs because the PCTs fund them, PCTs and NICE (National Institute for Clincal Excellence) will care though. :wink:
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costs

Postby Dovechick » Wed Feb 10, 2010 3:54 am

Sweetpea,
Our angle at www.ms-ccsvi-uk.org is not about the cost to the NHS, but more about the cost to the State... The figure was some £1.5 billion pounds in 2008.

http://www.iop.kcl.ac.uk/news/default.aspx?id=261
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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