Bringing Liberation to the UK

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

Postby Luvsadonut » Fri Jan 08, 2010 4:05 am

Not yet, but they are on our list.


I am in the process of arranging to meet an old friend who is a current MP and hopefully he may be able to have direct contact with the aforementioned MP's.
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Postby BodgeIT » Fri Jan 08, 2010 5:19 am

I was thinking if we should organise some foot soldiers to go to their MPs open days, what are they called clinics or something?
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Postby beerduff » Fri Jan 08, 2010 11:18 pm

Luvsadonut wrote:With relation to getting high profile people on board, does anyone know if David McClean MP for Penrith and Fiona MacTaggart MP for Swindon, who both suffer with MS have been contacted?


You possibly do have one other champion to the MS Cause in Scotland.
Although it is another tragic story.
If any one can find a contact.
She could be the light at the end of the tunnel.
http://news.bbc.co.uk/2/hi/uk_news/scot ... 924202.stm
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Postby Johnson » Sat Jan 09, 2010 12:21 am

beerduff wrote:
Luvsadonut wrote:With relation to getting high profile people on board, does anyone know if David McClean MP for Penrith and Fiona MacTaggart MP for Swindon, who both suffer with MS have been contacted?


You possibly do have one other champion to the MS Cause in Scotland.
Although it is another tragic story.
If any one can find a contact.
She could be the light at the end of the tunnel.
http://news.bbc.co.uk/2/hi/uk_news/scot ... 924202.stm


Look up her publicist/agent.

Strange, no mention of CCSVI there. Ms. Rowlings' 2.5 million quid, and high-profile support, could lead to Britain being the exemplar in moving this all "forward" (how I mourn the indiscriminate and facile use of that phraseology - and the loss of my own thesauric mind).

It should be fairly easy to get to her agent, or perhaps address her through an open letter to the editor of as many major papers as is possible. Call her out...
My name is not really Johnson. MSed up since 1993
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JK Rowlings et al..

Postby Dovechick » Sat Jan 09, 2010 12:41 am

She is on our list, in a way these high profile people are easier to find and reach than the doctors and researchers...
MPs and prospective parliamentary candidates are the easiest to meet in person, so yes BodgeIT I agree we should go and see them, after sending them the letter that we are composing as we speak.
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 » Sun Jan 10, 2010 5:58 am

Hi
I posted a link to the petition and one to a channel 5 news report explaining ccsvi and got over 350 sign's on a football web site, so What iam thinking is to get "it out there " is anyone else a member of a non MS forum,Where we can get it to people Who are not specifically searching for an MS link.
Just spreading the good news.

colmmc
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Postby Dovechick » Sun Jan 10, 2010 6:29 am

Great work Colm, I don't post of any other fan pages so can't claim the same response, so far only one of my contacts has responded. Stil we keep plugging on.
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 BodgeIT » Sun Jan 10, 2010 7:40 am

The thing to do now is to keep banging the drum from the fanpage.

100 + fans(although many are Italian) each with 150(ave) friends...do the math.

What numbers are we looking for? 10k? that would be 10% of MSers in UK...think we could go higher than that?

As well as wanging out there to loads of other sites..

colmmc are you on FB page?
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Postby colmmc » Sun Jan 10, 2010 9:26 am

colmmc are you on FB page?[/quote]

no but my 2 daughters are and have.
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CCSVI in the UK

Postby Badger » Sun Jan 10, 2010 9:41 am

:evil: I am a fellow Scot who has found no response from MP's, TV or Newspapers. I have contacted all of them to try to raise the profile of CCSVI but have had no reply to any of my requests.

I will not allow this to get me down though and the way I see it the door will open eventually. :D 8)
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Postby SkallyWags » Sun Jan 10, 2010 10:00 am

Thats it Badger, keep trying, a door will open somewhere.

Colmmc - did you go to the GP? What happened? Having thought about it, I think the best way is to get a referal from your GP to a neurologist to discuss CCSVI, talk to them, take the information and ask for a referal for a scan to see if you have any stenosis. The Radiologist that is giving us some guidance said that if the neuro says no then you can ask for a second opinion.

My husband has an appointment with a neuro on thursday to try this approach.
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contacting the media

Postby Dovechick » Sun Jan 10, 2010 10:18 am

I have just email Obanfm, a very small radio station run by volunteers that I know of as my inlaws lived in Oban for 40 years and Dad Findlay was a police sergeant in the town. I hope that they might like the story, they are always looking for interesting bits of info that will benefit locals. Fingers crossed. I'm starting from the bottom.
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 » Sun Jan 10, 2010 10:20 am

No not yet, I was waiting till we had the info pack ready.And I still an not sure In my own mind how to approach it/him.I will be going to see him shortly,Unfortunately I had my 6 monthly Neuro appointment about 6 weeks ago Pre ccsvi so have got a bit of a wait before I lock horns with him.
Still spreading the good news.
( I sound like a born again Christian )

colmmc.
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Postby mangio » Sun Jan 10, 2010 12:03 pm

Badger,

I am not sure this will make anyone feel better but you have the greatest
immune scientist of our time working in Scotland presently - Dr. Hume. A
paper published last year by his group was nothing short of pure brillance - Noble written all over it!

Although the immune system is now in question by many about it's role if any
in MS, I believe his discoveries will be a very big part of the future of
how to treat multiple sclerosis and cancer for that matter.

Possibly Mary Bradley Boyle can help as her brother is a doctor
in your part of the world and is a very open minded physician... just
a thought.
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Postby Boreas » Mon Jan 11, 2010 3:41 pm

This could be interesting for folks located in or around London: The Barts is going to have a "MS Research Day for people with MS and their families" on the January, 30th 2010.

http://multiple-sclerosis-research.blog ... h-day.html

You can download the program here - it doesn't say anything about CCSVI, however the head of department, Prof. Gavin Giovannoni who holds the chair of neurology seems to be a fairly reasonable person
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