This Is MS Multiple Sclerosis Community: Knowledge & Support

Here's a link to a new article in Globe and Mail.

http://www.theglobeandmail.com/news/nat ... 801/page1/

not awful.

I liked when the head neuro said "maybe it would have been better if the neuros had done research to comment on ccsvi, not just opposed it?


duh

I was hoping when I opened the link it would contain results from a clinical trial but no such luck. Look, I am sure there unsymapthetic neurologists out there that do not even want to consider CCSVI research and that is their choice but what do you expect?? All they have to go on is very little data and the word of a few researchers who believe they are on to something. From what it sounds like many neurologist just do not buy into the hypothesis. So what do you want them to do??? To them and many of us there is not enough proof that CSVI even exists so what would be everyone's suggestion of how the neurologists should approach this matter?? The accuasation that the MS Society wants to keep people sick is absolutley ridiculous. If there is anyone that people should be upset with it should be Zamboni himself who made CCSVI sound like a slam dunk but yet has been unable to convince the medical community that CCSVI even exists but of course that would put into question his hypothesis and that is a no no. Please someone show me the memo that has been circulated from MS Society to MS Society saying to their researchers and all their other members "please do not cure these people". Is it still possible to instill some common sense in all this?

Actually, Scorpion, I don't want to see the neurologists do the research. I want to see the appropriate specialists--ie the interventional radiologists and vascular surgeons do the research with the neuros doing the neurological follow-up.

That is the basis for Dr. MacDonald's proposed randomized double blind trial. The IRs and vascular surgeons will do the treatment and the neurologists will do the neurological follow up. Dr. MacDonald has a team of those professionals in place but continues to seek approval and funding, which he has not yet received.

We need to let him get on with it.

Also, when I read Dr. Zamboni's research, I don't find him implying CCSVI is a "slam dunk." He agrees more research and knowledge is needed.

It is the media-- not Dr. Z--who uses terms like "medical miracle" and "miracle cure." I think this is unfortunate because I don't think most professionals or people with MS consider CCSVI either a cure or a miracle. Rather, it seems to be an important piece of a a very complex puzzle.`

Now you are speaking my language! I would love to see this move forward as well. You pretty much summed up my thoughts. Lets get on with it!

Scorpion: Please note, I edited my last post to add a couple of comments about Dr. Zamboni, etc.

Doctors Dake, Sclafani, Hubbard, et al. are part of the medical community are they not?

NHE

A very small fraction of the medical community.

NHE ... don't forget;

Doctors Zivadinov, Haskal, Sinan (Kuwait), Siskin, Englander, (my wife's doctor who will remain unnamed at this point but is at a prestigious US university hospital - several other board members can confirm that claim - but will not name him), Saeed, Simka (Poland), Vogl (Germany), MacDonald (Canada), Bonn ... Mehta, Guttman-Weinstock

Doctors in Rhode Island, Indiana, Chicago, Minnesota, Florida, California, Texas, Delaware, New Jersey, Virginia, Arizona (who I'm not going to name because their names aren't out there - though I have seen some of them)

Doctors in Taiwan (see Algis' posts) ... China, Scotland, Australia, Jordan

... doesn't seem like such "a very small fraction" after all. Especially considering all the specialties out there - and the relative few who study the vasculature. It actually seems like a high amount of people who understand the vascular system are VERY interested in CCSVI ...

And aside from Simka who is also doing research ... none of those include "medical tourism" ...


and now they're going to subject mice to it ...

http://www.isnvd.org/2010/11/annual-meeting-italy/

more added (in red)

warm fuzzies

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Gotta start somewhere.

This is the quote in the article I can't get over.



Um, yeah I can imagine it.

I know...I had to think that one through, my Copaxone was "unknown mechanism of action," with carefully listed ways in which it would hurt me (but with a placebo-sized 28% reduction in lesions in exchange), first tested in expectation that it would cause EAE in mice rather than prevent it, ridiculously expensive...I don't think people realize just how bad pwMS have it in terms of the current standard of care? Not to say that the drugs and steroids and Tysabri don't help some, but they sure don't help much.

They can't explain how Copaxone works exactly ... so ... yeah, you're right. I can imagine a government approving a (well I guess shot instead of pill) without really knowing how it works ...

good point debp

I think you'll note that at the last Ectrims hardly anyone was saying ccsvi doesn't exist.

We're on to the second generation arguement: ccsvi is caused by ms.

so yes the medical community, or ms experts are convinced it does exist.