This Is MS Multiple Sclerosis Community: Knowledge & Support

Cool. That should end the hysteria.

Campath anyone?

What's next? A GI-NORMOUS study?!?!

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If you can't explain it simply, you don't understand it well enough. - Al Einstein

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Scorp, Using Marie Rhodes book as an example in this thread is just
plain wrong. Here is a statement Marie made on another thread.

Quote:
Second the title of my book "CCSVI as the cause of Multiple sclerosis the science behind the controversial theory" is descriptive of what genre of material is evaluated in the book, it is not a scientific conclusion of course because my book isn't "research" but reference. THIS IS IMPORTANT: THE TITLE IS CHOSEN BY THE PUBLISHER.

Bob

The study being refered to was an international genetics study on over 9,000 MSers and over 17,000 controls. The evidence for MS being automine related has been solidified by the fact that the 29 genetic markers were related to T cell proliferation, lyphocytes, cytokines, and other immune responses.

The markers were statisitically significant in MSers campared to controls. Although they are not the cause, they make people with the markers more suseptable to developing the disease. Vitamin D and NAG play huge roles on at least a few of the gene switches that cause gangliod branching, which is a tell tale response seen in MS. Eptstein barr may cause some of the gene switching. There are toxins, too. MS is a hodgepodge of factors. Unfortunately for ccsvi, it has very little to go by other than the testamonials presented by patients.

The science is new for ccsvi, and doctors are still debating if it is a natural variation, if it exists, or if it may be related to dehydration or extended immobility. Those are the studies being conducted. No clinical trials on the surgery, because the parameters for it have not been laid proper. Those who have tried to gather data from the surgeries are left with very little to go by.

I don't know if ccsvi causes any symptoms that can be relieved from the surgeries. So far, it is pretty vague and not leaning in that direction.

Orion I was not trying to single Marie out or did I imply she chose the name of the book. In fact I had no clue how the name of the book was chosen until reading what you posted above and honestly I have no problem with someone presenting the hypotheses that MS is caused by CCSVI. I was simply pointing out that the comment Zinamaria made was inaccurate.

In "fact", scorpion, with respect to your response to MrSuccess, there are almost no facts actually available to rely on with respect to any part of this debate. Lots of conjecture, some research results, some contradictory evidence and very few real "facts" that can't be contested by someone. So, in the end, MrSuccess is absolutely right to rely on common sense (rational thinking) based upon the best available evidence because, in the end, that is all good scientists have to rely on. So, some of the comments ascribed to these researchers ("Now we know what causes MS" with no plausible justification for that statement - !!!????) really make their conclusions very suspect... and that is common sense which tells me that.
...Ted

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

This only solidifies the case that the immune system plays a role in MS. In CCSVI theory, the immune system has a role to play.

There is a lot of research underway on endovascular treatment. The science is coming if not already here.


Extended immobility was not a factor in my case and my CCSVI was severe (80% and 99% bilateral jugular stenosis). Dehydration is more of a potential factor if we are looking at narrowing of the veins, not of the valve. Valve malformations in the jugular are the most common presentation of CCSVI according to clinical reports.

The Canadian government is funding clinical trials of endovascular treatment. Dr. Dake has a fully funded trial ready to go once he can get past the hold-up. Dr. Siskin and Dr. Mehta separately have trials underway as does BNAC. Dr. Simka and Dr. Ludgya have published data as well. I am sure I am forgetting some. Dr. Ponec presented on his registry results at the AAC symposium, that was interesting.

At ISNVD, the data presented showed a consensus that CCSVI treatment alleviated MS fatigue. MS fatigue is the most common MS symptom and it is not well explained nor does it have any treatment that particularly works.

That's great.

Ccsvi cannot be refuted, only modified based on new evidence. Therefore, it must be true or it must find a way to fit in to remain true. Can it be disproven?

How do you disprove the autoimmune theory of MS?

Perhaps by failing to find an antigen?

You tell white blood cells to politely stop attacking the immune system. If they keep attacking the immune system, ask them again.

In all honesty, the genetic analysis would have shown that the immune system was not involved. Instead, the genetic analysis greatly strengthens the theory.

THIS is how they announce a breakthrough - with reactionary jingo, straw men arguments and by putting down pwMS? Why frame an announcement about genes and MS with disdain for Zamboni and CCSVI patients?

And what have they come up with? More of the same metaphysical proof that the Earth, she is flat. They have no useful treatments to offer except perhaps more of the same immune-suppressant potions and concoctions that don't work.

Back to your regularly scheduled programming folks where MS is some mystery magical immune disease with no treatment and no cure - except gene therapy I guess. Why should we listen to these folks when all they want to do is abort us?

Actually it is not how they announced it, but some press did announce it just like that. Yes, all of my problems would have been solved if someone aborted me. That is a crazy good point about the genetic stuff. I was thinking treatment avenues, and didn't even think about the abortion opportunities.

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