This Is MS Multiple Sclerosis Knowledge & Support Community

BodgeIT wrote:

Just thought you'd like to know that there's a BBC Scotland reporter, based in Edinburgh, called Elizabeth Quigley who has MS. She's married to John Swinney who's Scotland's Cabinet Secretary for Finance.

Did anyone take on getting in touch with Elizabeth Sweeney?

Well, I tried, but could not find an address for her, Colm? said that it might be easier to get in touch with her husband and ask him to pass the message on, not sure whether that has been done.

OK, contacted her husband, let's wait and see.

Not around tonight, keep up the great work...

The media likes to follow real people and their stories. I have not found one on this website. Let me explain, write with facts about a real person, when talking about CCSVI. Say - before my angioplasty/stenting my MS was like.......... I was worn out by doing ....... for my kids, partner etc etc. Then say what it is like after the procedure. How long the changes took (days, weeks, months ?) Then say you don't know how the procedure works for MS but it has had an amazing impact on your life. Talk about having the tests and procedure and any effects you felt. Finishing by saying that you suggest anyone with MS has the test to see if they have restricted veins. AVOID pseudo science, do not assess changes in disease, do not give EDSS scores etc.

Once written then make the story available with a picture of the person and family to the news media. Make sure there are contact details for the person.
This sounds negative compared with recent posts on this subject but if a news campaign is going to suceed you need a dose of realism.

Point 2 - do not create a medic pack for CCSVI and MS as you are only re-inventing the wheel. Use csvi-ms.net.

Point 3 - MSRC is a great resource for pwMS but it is not a respected source for the medical fraternity (sorry squiffy2). MS Trust meets that need in UK, not MSS as it is too slow, conservative etc.

Point 4 - there are 100,000 pwMS in the UK not 85,000.

Point 5 - choose a different name from liberation for the GB audience. The term is too provocative at this early stage in the research.

That's enough realism for tonight.
Please remember I want CCSVI to be taken seriously.

MarkW

Mark,
1. Of course there are no personal stories on TIMS which is why we are going to write one. This site is a place for conversation not story telling.
2. We are not creating a pack of papers but a pack of links for medics. Some of us have already sent links off to a number of centres in the UK.
3. Not sure we want to involve any of the MS societies apart from sending them information. There is no useful information about CCSVI on these sites except for MSRC who has links to the research.
4. The number depends where you look for the information and as we are working on a rough estimate it does not really matter too much, as non of our figures are likely to be very accurate.
5. You may have a point here but the facebook page name cannot be changed without closing the page down. The picture/logo can be changed though. We will see what others think before changing things.
Lastly, you are entitled to your opinions of course but what makes you think that we do not want CCSVI to be taken seriously?

MarkW--don't you dare lecture me on how to get my message out. The people on this site are working day and night to get the message to the world. If you can do it better than knock yourself out. I'll stick to helping my small part of the world get informed.

Hey hey, me again. Im still reading articles - soon I will know more than Dr Zamboni!

MarkW thanks for the info. im sure that without intention you may have caused some offence - we all want this to be taken seriously that is why we are working so hard on it around everything else we do. Yes we are excited but do not mistake that for being naive (apart from me where you are probably right!).

Thats said I agree with your thoughts on the personal story.

I have also looked at the website you suggested, http://csvi-ms.net/en, your right, it does have a lot of information so a link to one site would be great. Dovechick and I will look into it. Thank you.

Guys I am signing off for tonight as I only managed 5 hours sleep last night and this chick needs at least 8 to function properly!

xx.

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?

Not yet, but they are on our list.

Fascbook's down...what the hell do I do now? I'm going to go and ask someone on twitter.

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?

Hi luvsadonut...me too!

As a group only a couple of people have been contacted at the moment, we're still putting together a consistent message for different people.
Each one needs to be crafted slightly differently, I'm hoping we can start in a day or so. If you have some time we could always do with support.

Are you active in the FB group, can we put a nickname to name?

MarkW,
FWiW I agree with most of your posts and will reply to each in turn:

1. Agree but recently colmmc has been contacted in relation to the petition, my understanding is the story will be ablout the action, not any personal story about what we're actioning. colmmc is the story, someone willing to get off his ass and cause something.
2. I think the misunderstanding here is my fault, I've just called it a Medical pack somewhere, it was always an information pack crafted for the medical communitites we will be sending it to. It is not re-inventing the wheel but providing details of where they can find the wheel blueprints.
3. Not sure what you're point is here...are you saying don't point the medical community to MSRC? OK, don't think it was on the cards.
4. OK
5. This has been discussed elsewhere, most people agree with you and clearly a small mistake at the earliest stage never-the-less this is a pressure group and may need to get provocative. The website will be the main public face of the CCSVI in the UK. I'm wondering though if a better name for the group might make it easier to grow numbers...

Facebook is working...
Been in touch with the mother of the CCSVI.co.uk web dev and she has agreed to pass a couple of links on. One the facebook Bringing Liberation to UK and one that Mark W passed on here:
http://csvi-ms.net/en?page=2
Which itself has a link to TIMS.

Skallywags, Dovechick....it's a busy day for CCSVI, a new revised protocol from Dr Haacke and another US University on board.

http://bit.ly/8kxlm3
http://bit.ly/4n0R6i

Yea, saw that. One day things will be happening here too...
I'm just going through some threads here locating UK members and posting links to our facebook and the petition... I may preaching to the converted, but duplication is bound to happen when we use avatars.