Reply to: My Story : MS and the Unwelcome Guest

[Board Game Geek]

Indeed ! We've worked hard for this, and now our team are getting requests to do GMTV and others. Once one seemed to run the story (Sky News), we keep getting calls from others now ! It's all good publicity !

[SizeZero]

This is getting some serious airtime on BBC morning television today.

[Ardesco]

The second study used different protocols for scanning stenosis, as they don't have the advanced scanners the Italians used, nor the same algorithms for setting up their machines.

Why does the cynic in me say that people are going to take the US results as more valid than the Italian ones even though the Italians had the more up to date tech...

[milanbenes]

BGG,

very interesting update.

Please keep them coming, this could be any of us.

All the best, the force of CUK is with you.

Milan.

[Board Game Geek]

Thanks folks.

First there was the Italian study, which established a link, and the need for more reseach.

We've just have a second trial in Buffalo, NY report preliminary findings, and corroborate some of the findings from the Italian study.

They too have seen a higher incidence of vein stenosis in offically diagnosed MS sufferers (about a 62% percent chance in their study)

The did use different control groups than the italian study. They had a 25% detection in supposedly healthy people. Which has raised a few eyebrows. Is this a group of people who have vein stenosis, but have not developed MS yet ? Is this a group of people who have another undiagnosed illness, that vein stenosis is associated with, but wasn't included in the Italian study ?

Hence, could vein stenosis be responsible for more than just MS ?

The second study used different protocols for scanning stenosis, as they don't have the advanced scanners the Italians used, nor the same algorithms for setting up their machines.

So many questions, and as the second trial group say "this raises more questions than ever and will branch off not just in to MS. We are going to pursue other neurologial diseases as well. With regards to the MS however, our findings parallel the italian study, but at 62% instead of 99%"

They release another set of 500 more scans later this year, using newer scanning equipment.

[Ardesco]

Only just seen this today and to be totally honest I don't really know what to say.

My best wishes go out to you, and I have also added my name to the petition, lets hope that this gets taken seriously and the research is done quickly and accurately so that they can start rolling this out to everybody who needs it.

[lightng]

Moving vid. Signed.

TTT BGG!

[Board Game Geek]

If you see anything about CCSVI in the newsin the coming days or weeks, that's come from our Facebook Core Team who are driving the media. We're at the front of the news releases in the UK. So no need to let us know :-)

[mudskipper]

Excellent news - well done!

[Board Game Geek]

Thanks for your support folks especially the signatures !

Yup, the Beeb came online and did an interview as per the link, and we've just done a Sky News interview today that has also aired. We've got some great members of the core team who are pushing to get the word out !

[oracleslave]

http://news.bbc.co.uk/1/hi/health/8509106.stm

[suityou01]

Apologies if this is upsetting.

I and our group need all the help we can kindly get.

Thank you.

SY01 and SY02 are now fans of the facebook group, and have signed the petition. I post this to bump the thread back up to the top. Friday evening people have more time to do this stuff and prolly think "Oh yeah meant to do that".

Go to facebook and search for ms-ccsvi-uk. Click on the link, then click the "Become a fan" button. 765 members at time of posting.

or if you don't facebook the petition site is

http://petitions.number10.gov.uk/CCSVINOW/

2134 signatures at time of posting.

[Bagpuss]

Watched the vid last night and read a fair few MS forum posts etc. A lot of admiration for you, you are doing a cracking job. My initial read throughs had me wondering if this was some sort of straw-clutching but god damn those stats are amazing! More than a ray of hope that the actual source of this illness has been found. Absoultely amazing.

They are good, but need to be properly peer reviewed. I can set up a trial that gives me the results I want if I compare apples with oranges and don't have a proper control group. The problem with surgical interventions is they don't necessarily undergo a lot of independant scrutiny, hence the drilling of holes in the head for various conditions and the dubvious practice of labotomisation.

[Churchill]

Get a room!

Painters are in.

[RichardCranium]

Get a room!