This Is MS Multiple Sclerosis Knowledge & Support Community

New Chronic Cerebrospinal Venous Insufficiency - CCSVI section launched on the MSRC website - http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2952

I would welcome suggestions from the ThisisMS CCSVI forum contributors on what other information they think should be included, bearing in mind MSRC's need to maintain a totally unbiased stance on this subject, as we do with all others.

You can email me on squiffy@msrc.co.uk

squiffs

hi squiffy, does this sentence need to be re-worded

"Plasma and iron from blood deposited in the brain tissue can also be very damaging leading to iron along with other unwelcome cells, to cross the crucial brain-blood barrier."

Yes, Jimmy, well spotted ;O) Have amended, thank you

I love the timeline Sqiffy.

I've been trying to put one together myself and you've made it so easy to read.

Claire

"Plasma and iron from blood deposited in the brain tissue can also be very damaging leading to iron along with other unwelcome cells, to cross the crucial brain-blood barrier."

q: is it *certain* that the iron accumulation in MS brains occurs because of reflux causing iron to cross the BBB and be deposited there or is it at this stage an *interpretation*

i am not saying i disagree with the idea of an iron deposition - reflux correlation, i am just wondering about the level of certainty in the sentence..

Hi Claire, thanks but I cannot take credit for it, as it says at the bottom of the Timeline, this came from the CCSVI in Multiple Sclerosis Facebook Page - http://www.facebook.com/pages/CCSVI-in- ... 0796282297

I have tried to pull together as much relevant information from across the Net, and would like to also thank Joan for allowing me to use her very useful Glossary from here as well

okay last thing: is there a point to the image being depicted prone, and i wonder, can anyone read those labels? the alt-text just says "CCSVI"

that is that for the moment, my keyboard seems to be stuck on french at this site but not elsewhere, it is making me a bit nuts and i should be doing other things anyway

thanks for bringing the page here for review, squiff, i am sure more informed heads than mine will be able to comment further..

JL

jimmylegs wrote:"Plasma and iron from blood deposited in the brain tissue can also be very damaging leading to iron along with other unwelcome cells, to cross the crucial brain-blood barrier."

q: is it *certain* that the iron accumulation in MS brains occurs because of reflux causing iron to cross the BBB and be deposited there or is it at this stage an *interpretation*

i am not saying i disagree with the idea of an iron deposition - reflux correlation, i am just wondering about the level of certainty in the sentence..

Hi Jimmy, I have tried to distill a consensus of information, where possible,and used what is thought to be known at present. As things coalesce and become more concrete, as more results and hard facts come to light, I will, ofcourse amend the pages, theories and facts to reflect this. CCSVI as a subject is changing and evolving so fast that I had to take some middle path for now with this as a whole, and try and keep things in laymans terms as far as possible.

Hope that makes sense.

Squiffs

jimmylegs wrote:okay last thing: is there a point to the image being depicted prone, and i wonder, can anyone read those labels? the alt-text just says "CCSVI"

that is that for the moment, my keyboard seems to be stuck on french at this site but not elsewhere, it is making me a bit nuts and i should be doing other things anyway

thanks for bringing the page here for review, squiff, i am sure more informed heads than mine will be able to comment further..

JL

Hi Jimmy, the labels are just graphical representative of blood flow. No text, there is a larger version on the CCSVI Research page. I got this image months ago from THE MANY SONOGRAPHIC FACES OF THE CHRONIC CEREBROSPINAL VENOUS INSUFFICIENCY - http://koti.mbnet.fi/hiihoo/webbi/multi ... is-USG.doc . I am still looking for a high quality picture summarising CCSVI better than this one. Any suggestions would be appreciated, ofcourse.

Found a new picture, which I think works better.

I really, really appreciate what you're doing. The german MS society has published two articles on CCSVI so far, one in october telling that this is an old idea that was abandoned decades ago because there was more evidence found that it's an autoimmune desease (!), and their crappy official statement on CCSVI in december (which I posted here but won't link, it's good if it's forgotten.). And you can't even find those articles unless you type CCSVI in their search tool.

Nothing else about CCSVI, nothing about this paper saying that MS isn't autoimmune. But much about what prizes they won and what Federal Crosses of Merit they got. It's a tragedy. No, they aren't even reporting sceptically or doubtful, they simply ignore it or try to hush up CCSVI in the german-speaking countries (up to 150.000 PwMS).

Together with a few other patients and caregivers I translate as much as my limited time as an entrepreneur allows and put it on their and our forum and elsewhere. But, for god's sake, it should be their job!

cah, which paper states MS is not auto-immune?

It's this one: http://www3.interscience.wiley.com/jour ... 1&SRETRY=0

Last sentence of the abstract: "The findings suggest that plaque formation has some basis other than destructive cell-mediated immunity directed against a myelin or oligodendrocyte antigen." Well, "It's not autoimmune" might be a little bit too abbreviated but it's a news that should be published on their website nonetheless.

cah wrote:I really, really appreciate what you're doing. The german MS society has published two articles on CCSVI so far, one in october telling that this is an old idea that was abandoned decades ago because there was more evidence found that it's an autoimmune desease (!), and their crappy official statement on CCSVI in december (which I posted here but won't link, it's good if it's forgotten.). And you can't even find those articles unless you type CCSVI in their search tool.

Nothing else about CCSVI, nothing about this paper saying that MS isn't autoimmune. But much about what prizes they won and what Federal Crosses of Merit they got. It's a tragedy. No, they aren't even reporting sceptically or doubtful, they simply ignore it or try to hush up CCSVI in the german-speaking countries (up to 150.000 PwMS).

Together with a few other patients and caregivers I translate as much as my limited time as an entrepreneur allows and put it on their and our forum and elsewhere. But, for god's sake, it should be their job!

Thank you Cah MSRC always tries to provide ALL information on any given MS subject, both for and against, and we let the reader make their own adult, informed choices, from this. We endeavour to provide as much thorough and up to date information as we can, with the dedicated small team we have. So to hear that people appreciate means a lot to us.

squiffs

I don't know if it is appropriate, but many messages indicate that there is considerable misinformation about CCSVI. Would it make sense to address them perhaps in a FAQ format?

ITEM Two people have died while being treated

ITEM What does Zamboni know about veins. He's a psychiatrist.

ITEM Thus far, Zamboni has only treated his wife.

ITEM Testing in Berlin has not found any evidence of CCSVI

I'm sure others can suggest additional items like this.