This Is MS Multiple Sclerosis Knowledge & Support Community

Deny, deny, deny. Then ask for a recess. Delay, delay, delay.

"You know, the darkest hour is always just before the dawn." -D Crosby

1eye wrote:"You know, the darkest hour is always just before the dawn." -D Crosby

Until dawn, we have to make our own light... candles, anyone?

You don't have to wear a tin foil hat or believe in conspiracy theories to know that people who live OFF of MS to the tune of likely around $20 billion a year (pharmaceuticals, plus neurologists) are not likely to want to see everything they now do be up ended by a new approach which may not require their drugs or services.

There is more than enough evidence that a large number of people with MS have cerebrospinal venous malformations. Further research in this regard will only confirm what is already pretty obvious to anyone who cares to look.

From a patient perspective, I think there are only two relevant questions requiring further research:

• 1. Do I have treatable CCSVI malformations, and
  2. Where can I get treatment?

Questions about the relationship between CCSVI and MS are of academic, not clinical, interest.

Of course, any research on the benefits of CCSVI treatment will be useful to those who are not yet convinced. Research on stenting cerebrospinal veins as well as other questions on the mechanics of the procedure are also relevant, but not something that has to be done before people get treatment. They are part of a normal learning curve and can only happen if treatment is going forward. We've been doing angioplasty and treating veins percutaneously for decades now. That is not something requiring research.

Research necessary to understand if treating CCSVI is worthwhile from the perspective of public funding can be completed in 3-6 months, especially if treatment is being provided at multiple sites around the world.

As has been pointed out, US insurance already covers treatment of vascular occlusions of 50% of more so all we really need to know is if the anecdotally reported improvements of CCSVI treatment hold for a larger sample, something that can only happen if treatment is being done for a large number of people.

Those living OFF MS today can take their sweet time in funding and conducting as much research as they want to satisfy their curiosity and explore interesting scientific and medical questions, but patients can probably fund the clinically necessary research that should open the flood gates to widespread treatment, funded by government and private insurance where that is the system.

Even the question of whether CCSVI is the whole answer to the mystery of MS is not clinically relevant, unless you want to argue that impaired cerbrospinal blood flow is a good thing. Hard to make that case, even with a double-blind, placebo controlled, large "n" study.

I was looking yesterday at a copy of a book that I bought when my son was diagnosed a few years back.....Multiple Sclerosis, the Facts you need by Dr. Paul O'Connor....no wonder I could never figure out what the facts really were...there are no "real facts" in it at all....it's kind of laughable now..." ms is probably an autoimmune disease", "we don't know why the immune system attacks the myelin", "despite extensive research, we still don't know enough about what causes ms", "when we understand the exact cause of the disease, we will have more hope of finding effective treatments" (wonder if he is looking into CCSVI...I think I read he is one of the naysayers)....anyhow most of the book is about managing symptoms and all the drugs available.....I didn't realize there were that many drugs for all of the symptoms.....wow

Cece wrote:

Trish317 wrote:I've spoken to two interventional radiologists who want to do the testing and perform the procedure and they both said they can't because of their IRB's.

shoot that makes a lot of sense...that the prerequisite of IRB approval is itself so much trouble that IRs would shy away from this...I hadn't thought about it from that angle.

I didn't really get the impression that they're shying away from it but that their hands are tied. When their hospital or medical center says "You can not perform this procedure until it's investigated and approved.", they're stuck.

I'm doing some research on the powers and limitations of IRB's.

eric593 wrote:I strongly disagree with this paper's position.

There are a lot more positions than the two starkly opposing possibilities that Embry presents.

Secondly, I personally take a middle position of believing that we need preliminary objective research done to assess SOME level of effectiveness of the procedure.

I believe that we DO need a minimal level of evidence before moving ahead here, especially if the healthcare system will be paying for it.

Furthermore, I think we need research on the BEST way to treat this and this should be done concurrently with the other study.

It might not be the long term study that we'd like, but I really think we still need some important answers before blindly having our healthcare system pick up the tab with no standards in place to accumulate data from patients being treated.

Other people may disagree with me, but that doesn't make my opinion any more or less valid than yours is. Even the DOCTORS (Zamboni and Zivadinov) are cautioning us not to proceed internationally and quickly but to WAIT if at all possible until the research is done. That's pretty much what the neuro's and MS Societies have said too.

I deleted most of your post to reduce the size of the quote above, but wanted to repeat your excellent summary of some important points. I very much agree with what you say here.

I had some of the same issues with Embry's prior diatribe on CCSVI, in which he presented the false dichotomy of get tested/treated immediately or else wait 8+ years for all the studies to be completed. That's nonsense. Information and results aren't all-or-nothing. Studies are already underway, and results will be coming out continuously. Sure, there probably won't be a massive, definitive study completed in the next couple years, but to my knowledge none of the MS societies or neurologists have suggested that's the minimum required before anyone should get tested or treated. If CCSVI is as big a deal as most here believe, and the treatments prove safe and effective, compelling results will arrive much sooner.

Elsewhere in this thread it was suggested that since blocked veins are treated in other parts of your body, shouldn't CCSVI be treated the same way? I think one major reason things might be different is that by definition, CCSVI affects veins very close to your brain and/or spinal cord, which are both rather delicate. So any surgery in their vicinity deserves extra caution.

And let's not forget that health care and research dollars are both limited resources. It's fine to say the government should put money into CCSVI treatments, but that money has to come from somewhere. What other medical care or research should be suspended to pay for it? I'd bet there are other medical conditions for which exciting but unproven treatments have their own vocal supporters seeking those same dollars, not to mention proven treatments that need funding for whatever reason.

/Scut

CCSVI affects veins very close to your brain and/or spinal cord

You have a pretty low brain and in the case of the azygos; a pretty much shifted spinal cord

health care and research dollars are both limited resources

Some of us are not even asking for that money - Just wanna be tested and treated by competent Drs. (ie. Dake, Sclafani, Zamboni, and others...).
That way of handling things might lead for some patients to go get treated 'anywhere' by 'anybody' and that will lead to a mess....

ScutFarkus wrote:

eric593 wrote:I strongly disagree with this paper's position.

There are a lot more positions than the two starkly opposing possibilities that Embry presents.

Secondly, I personally take a middle position of believing that we need preliminary objective research done to assess SOME level of effectiveness of the procedure.

I believe that we DO need a minimal level of evidence before moving ahead here, especially if the healthcare system will be paying for it.

Furthermore, I think we need research on the BEST way to treat this and this should be done concurrently with the other study.

It might not be the long term study that we'd like, but I really think we still need some important answers before blindly having our healthcare system pick up the tab with no standards in place to accumulate data from patients being treated.

Other people may disagree with me, but that doesn't make my opinion any more or less valid than yours is. Even the DOCTORS (Zamboni and Zivadinov) are cautioning us not to proceed internationally and quickly but to WAIT if at all possible until the research is done. That's pretty much what the neuro's and MS Societies have said too.

I deleted most of your post to reduce the size of the quote above, but wanted to repeat your excellent summary of some important points. I very much agree with what you say here.

I had some of the same issues with Embry's prior diatribe on CCSVI, in which he presented the false dichotomy of get tested/treated immediately or else wait 8+ years for all the studies to be completed. That's nonsense. Information and results aren't all-or-nothing. Studies are already underway, and results will be coming out continuously. Sure, there probably won't be a massive, definitive study completed in the next couple years, but to my knowledge none of the MS societies or neurologists have suggested that's the minimum required before anyone should get tested or treated. If CCSVI is as big a deal as most here believe, and the treatments prove safe and effective, compelling results will arrive much sooner.

Elsewhere in this thread it was suggested that since blocked veins are treated in other parts of your body, shouldn't CCSVI be treated the same way? I think one major reason things might be different is that by definition, CCSVI affects veins very close to your brain and/or spinal cord, which are both rather delicate. So any surgery in their vicinity deserves extra caution.

And let's not forget that health care and research dollars are both limited resources. It's fine to say the government should put money into CCSVI treatments, but that money has to come from somewhere. What other medical care or research should be suspended to pay for it? I'd bet there are other medical conditions for which exciting but unproven treatments have their own vocal supporters seeking those same dollars, not to mention proven treatments that need funding for whatever reason.

/Scut

This procedure is performed all the time on the jugular veins of dialysis patients. It's also covered by insurance. It has absolutely nothing to do with the location of the stenoses. If that was the case, dialysis patients wouldn't be getting the procedure either.

I don't have MS but the man I'm in love with does. He was diagnosed with Primary Progressive in June 2007. His condition has, recently, started to rapidly deteriorate. Thirty years ago, he sustained a broken neck and has had four neck surgeries. The theory is that CCSVI is genetic but trauma has not been ruled out as a cause.

Why shouldn't he be tested and receive a procedure that's performed on people every day if it's proven that his jugular veins have the stenoses?

There are risks in any medical procedure but it's not like this is really a new one. It's only new in relation to how it may, or may not, effect MS. If a patient chooses to take a chance on a proven medical procedure then that should be their right.

Of course, results are coming out continuously. Of course, more science, more research is needed.

My argument, my gullible position, as one of the mentally impaired people all these researchers are ostensibly trying to help (I do not doubt the purity of, impugn, anyone's -- I say anyone's -- motives), is that some people, myself included, guilelessly, innocently, naively, think we don't need any more proof. We are so easily fooled, aren't we? Good thing we have all those learned men protecting us from ourselves. Yessiree Bob.

Stupid as we are, fools who will soon be parted from their money, at a real-life roulette table, involving merely our own lives and our own money and our own health, (and those of all of our loved ones, and immediate families), cannot now even be tested, for a condition that many say has nothing to do with our having MS, because we do have MS, after all, and by god we are going to be protected from misspending any of that money before the lawyers and so on get their hands on it, even though there is nothing else they can offer, but just for the principle of the thing, even though, and especially because our fathers fought for the same freedom, not so many years ago.

What sane sense that makes! What a perfectly ordinary day this is! What a glorious time to live in, when such beacons of truth and astute wisdom are there to guide our every financial transaction. This is, indeed, the best and most eminently sensible of all possible worlds, isn't it?

I am especially proud of the world I and my peers are handing down to our children, because it just makes so much gosh darned sense doesn't it? Well, I for one can die a happy man. Yassuh.

ScutFarkus wrote:

eric593 wrote:I strongly disagree with this paper's position.

There are a lot more positions than the two starkly opposing possibilities that Embry presents.

Secondly, I personally take a middle position of believing that we need preliminary objective research done to assess SOME level of effectiveness of the procedure.

I believe that we DO need a minimal level of evidence before moving ahead here, especially if the healthcare system will be paying for it.

Furthermore, I think we need research on the BEST way to treat this and this should be done concurrently with the other study.

It might not be the long term study that we'd like, but I really think we still need some important answers before blindly having our healthcare system pick up the tab with no standards in place to accumulate data from patients being treated.

Other people may disagree with me, but that doesn't make my opinion any more or less valid than yours is. Even the DOCTORS (Zamboni and Zivadinov) are cautioning us not to proceed internationally and quickly but to WAIT if at all possible until the research is done. That's pretty much

I deleted most of your post to reduce the size of the quote above, but wanted to repeat your excellent summary of some important points. I very much agree with what you say here.

I had some of the same issues with Embry's prior diatribe on CCSVI, in which he presented the false dichotomy of get tested/treated immediately or else wait 8+ years for all the studies to be completed. That's nonsense. Information and results aren't all-or-nothing. Studies are already underway, and results will be coming out continuously. Sure, there probably won't be a massive, definitive study completed in the next couple years, but to my knowledge none of the MS societies or neurologists have suggested that's the minimum required before anyone should get tested or treated. If CCSVI is as big a deal as most here believe, and the treatments prove safe and effective, compelling results will arrive much sooner.

Elsewhere in this thread it was suggested that since blocked veins are treated in other parts of your body, shouldn't CCSVI be treated the same way? I think one major reason things might be different is that by definition, CCSVI affects veins very close to your brain and/or spinal cord, which are both rather delicate. So any surgery in their vicinity deserves extra caution.

And let's not forget that health care and research dollars are both limited resources. It's fine to say the government should put money into CCSVI treatments, but that money has to come from somewhere. What other medical care or research should be suspended to pay for it? I'd bet there are other medical conditions for which exciting but unproven treatments have their own vocal supporters seeking those same dollars, not to mention proven treatments that need funding for whatever reason.

/Scut

Lot of MS patients are going out of their country to get treated. Are they asking for system to pay for their treatment. No. They want willing Drs to be allowed to carry out this procedure in their country.

Roadblocks are being put in the name of more research, without looking into the research that is already available. If the available research points towards CCSVI then more research ...

All Dr. Embry is asking for is a just system in which patients health is of prime importance than anything else. If the system was already doing its job, we would not need Dr. Embry at all.

What other medical care or research should be suspended to pay for it? I'd bet there are other medical conditions for which exciting but unproven treatments have their own vocal supporters seeking those same dollars, not to mention proven treatments that need funding for whatever reason.

How about suspending MS stem cell research being carried out by the genius Freedman?

is Freedman's stem cell research funded by MS society?....I think it is...and I wonder how much money he is getting for that?.....it seems like a legitimate avenue to follow but with the overwhelming positive outlook of CCSVI treatment, you would think that the MS would open their coffers a little more and answer everyone's questions in the shortest amount of time possible....they've got the money, we all know that and it's our money actually....I just got a letter recently from the MS society..(they wanted me to become a research partner for a mere $1,000!)...it was from a scientist who has been studying proteins and MS...but she has been at it for 7 years and now happily has her own lab in Toronto...funded by the MS society.....her words are "we don't know what causes it, and we don't yet have a cure. Without the MS society, the pace of progress would be very slow. The only way to a cure is putting money into research." So if they are only giving $200 grand for each project.into CCSVI...it doesn't look like they are actually "looking for the cure" anytime soon. The last line of the letter is "We can all be optimistic".

jackiejay wrote:is Freedman's stem cell research funded by MS society?....I think it is...and I wonder how much money he is getting for that?.....it seems like a legitimate avenue to follow but with the overwhelming positive outlook of CCSVI treatment, you would think that the MS would open their coffers a little more and answer everyone's questions in the shortest amount of time possible....they've got the money, we all know that and it's our money actually....I just got a letter recently from the MS society..(they wanted me to become a research partner for a mere $1,000!)...it was from a scientist who has been studying proteins and MS...but she has been at it for 7 years and now happily has her own lab in Toronto...funded by the MS society.....her words are "we don't know what causes it, and we don't yet have a cure. Without the MS society, the pace of progress would be very slow. The only way to a cure is putting money into research." So if they are only giving $200 grand for each project.into CCSVI...it doesn't look like they are actually "looking for the cure" anytime soon. The last line of the letter is "We can all be optimistic".

As her to try some other disease to stay alive. Her MS days are numbered ...

Trish317 wrote:

ScutFarkus wrote:

eric593 wrote:I strongly disagree with this paper's position.

I deleted most of your post to reduce the size of the quote above, but wanted to repeat your excellent summary of some important points. I very much agree with what you say here.

This procedure is performed all the time on the jugular veins of dialysis patients. It's also covered by insurance. It has absolutely nothing to do with the location of the stenoses. If that was the case, dialysis patients wouldn't be getting the procedure either.

Wait, can you clarify this and provide references? You're stating that dialysis patients get balloon angioplasty and/or stents in their jugular veins every day? I've never heard of this.

Trish317 wrote:Why shouldn't he be tested and receive a procedure that's performed on people every day if it's proven that his jugular veins have the stenoses?

There are risks in any medical procedure but it's not like this is really a new one. It's only new in relation to how it may, or may not, effect MS. If a patient chooses to take a chance on a proven medical procedure then that should be their right.

I have no problem allowing people to pay for this procedure themselves if they want it. In fact, I support the idea whole-heartedly. As a Libertarian, I don't want the government telling me what I can and can't do.

But when you're talking about making others pay for an experimental procedure, e.g. insurance providers or the government, I think the only defensible position is to rely on the science, and the science of CCSVI isn't ready yet.

That said, my main criticism of Embry's post is how badly he mis-characterizes the position of the MS Societies and neurologists. Even the doctors who have the most to gain from CCSVI, e.g. Zamboni himself, are urging people to wait. And they aren't saying people should wait 10 years, they're just suggesting people wait until more is known. You can (and should) have a rational argument over how much more we need to know before insurance should be compelled to pay for the procedure, or the risk vs reward for early treatment, but you've got to start with a fair statement of the opposing views.

/Scut

suggesting people wait until more is known

And how may we know? Killing more rats for 30 years? The only way to 'know' is to do the tests and the procedure; and if then it is relevant for the well-being of the community then it is reasonable that the community pay...

Am I missing something?

Algis wrote:

suggesting people wait until more is known

And how may we know? Killing more rats for 30 years? The only way to 'know' is to do the tests and the procedure; and if then it is relevant for the well-being of the community then it is reasonable that the community pay...

Am I missing something?

Also, we need to quantify "more". If "more" means waiting for 20 years doing nothing then we had it ..