Liberation or Placebo Effect (article)

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Liberation or Placebo Effect (article)

Postby zap » Tue May 18, 2010 11:05 am

http://www.montrealgazette.com/health/H ... story.html

I can't help but wonder who paid for this article ... :P
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Postby cheerleader » Tue May 18, 2010 11:08 am

yeah...gotta love those "facts"-- huh, Zap?
I ripped it apart for breakfast this morning, and posted it on the FB page-

Dear Canwest....

cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby zap » Tue May 18, 2010 11:20 am

awesome rebuttal ... this is one of the most hatchety of the articles I've seen yet, for sure.
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Postby cheerleader » Tue May 18, 2010 11:54 am

Hachety is an awesome adjective, Zap...
Here's a big surprise....Canwest is the corporation that tried to get rid of Canada's ban on direct to consumer pharma advertising.
hmmmmm

link to CanWest bid story
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Piling it Higher

Postby FlashHack » Tue May 18, 2010 1:01 pm

Great rebuttal. If Canwest keeps churning this drivel out, puppies and parrots around Canada will never want for cage liners.
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Postby Asher » Tue May 18, 2010 1:12 pm

Greed is the most powerful of human motivators that breeds cynicism and clandestine practices. Thank you Cheer for showing us that humans can transcend greed and selfishness.
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Postby cheerleader » Tue May 18, 2010 2:19 pm

Asher wrote:Greed is the most powerful of human motivators that breeds cynicism and clandestine practices. Thank you Cheer for showing us that humans can transcend greed and selfishness.


...wait til you get my bill, Asher.

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Postby Direct-MS » Wed May 19, 2010 7:07 am

May 19, 2010

Dear Ms Levy and Dr Lang,

I read your recent column on the treatment of CCSVI (Liberation or placebo effect? MS surgery, Montreal Gazette) and was very surprised at how much you left out about the science of CCSVI. You completely missed the implications of the key scientific findings of CCSVI and why these findings strongly indicate that it is important to be treated for CCSVI sooner than later.

First of all the current science has left no reasonable doubt that CCSVI is associated with MS, that is, it is far more common in persons with MS than the general population. This is based on Dr Zamboni’s research as well as published information from other centres, including a major study at the University of Buffalo. No credible researcher is disputing this clear association. Of course, association alone does not mean cause. Your statement “CCSVI, if that condition actually exists” indicates that neither of you have [removed extra word 'not'. JL] read the literature (e.g. the April issue of International Angiology which had 13 contributions on CCSVI). How you think you can write an intelligent column without such background reading boggles my mind.

Another critical scientific finding which you seemingly know nothing about is that the venous malformations that drive CCSVI are almost exclusively congenital, that is, they were there at birth. Again comprehensive papers have been published on this and it is very widely accepted. This is critical because it shows that CCSVI precedes the MS disease process and is not an effect of it.

Finally, it is also well accepted that biological mechanisms which are a consequence of CCSVI, such as reflux of venous blood back to the brain, the deposition of iron in the brain, hypoperfusion, and the upregulation of adhesion molecules on the endothelium of the venules, all can be reasonably related to the MS disease process.

I would also emphasize that no one credible is claiming MS is not an autoimmune disease. The huge MS data base shows it almost assuredly is. However, it also must be emphasized that the biological mechanisms associated with CCSVI all significantly enhance the autoimmune process.

This brings us to another of your ill-conceived statements. “CCSVI, and MS, breaks down on a number of other fronts, including the fact that patients who have impaired blood flow in their veins as a result of surgeries, for example, don't develop MS. Similarly, vessels tend to narrow as we age and yet MS is not a disease of older individuals. The blocked vein theory of MS is so out of keeping with our understanding of the disease that it might be compared to fixing a burned out car radiator by changing the tires of a car.” I was embarrassed for both you when I read it. MS is an autoimmune disease which is substantially aggravated by the co-occurrence of CCSVI. Not everyone with MS has CCSVI and not everyone with venous problems has MS. This again is well established in the literature. I cringe when I read ridiculous statements which attempt to discredit the CCSVI/MS association. You two are better than the nonsense you wrote.

I might note that CCSVI helps to explain a major puzzle in MS. As you both well know, the brain is protected from the blood-borne, immune system by what is known as the blood-brain barrier (BBB); greatly strengthened, blood vessel walls which prevent the passage of immune cells into the CNS. It has always been a problem to explain why the autoimmune cells were able to cross the BBB so easily in the MS disease process, given that evolution had ensured this would not happen. Of course the trick is that the biological mechanisms associated with CCSVI degrade the integrity of the BBB and allow the autoaggressive immune cells to cross the BBB much more easily. Thus, with CCSVI as part of MS, we now have an improved, more theoretically reasonable, disease model which fits an evolutionary perspective.

Given all of the above, there can be little doubt that CCSVI is an important part of the MS disease process because 1) it is associated with MS,2) precedes MS and 3) can reasonably contribute to the actual MS pathogenesis. As an analogy, just imagine if people with persistent back pain were found to have a pin sticking in their backs. If, in most cases, it was found the pins were there before the back pain and the pain was associated with the pin, then it would be reasonable to postulate the pins were part of the problem. Of course, if the pins were shown to be there after the pain, then one would assume the pin is not a big player in the problem and may be an effect of it (a failed treatment?).

The question now becomes now that once it is established that the pins precede the back pain and can help to explain it, do we wait for 7 years of research before pulling the pins, or do we pull the pins and at the same time do research to determine how they got there, how they cause the pain, what is the safest way to remove them etc. Clearly the latter is the common sense approach. Any advocacy of the first option immediately raises the spectre of a hidden, self-serving agenda.

Exactly the same logic applies to CCSVI and MS except it is more important that treatment be done as soon as possible. This is because, in the 7-10 years needed for all the research, many people with MS will suffer serious, irreversible damage to the CNS and will experience serious clinical symptoms because of such damage. Because CCSVI is almost assuredly an important part of the MS disease process as the current science has shown, then it is important that it be resolved as soon as possible. There is no doubt that large amounts of research are needed on CCSVI but treatment of those with MS cannot wait until this research is completed.

In summary, what the media (including you) have missed is that the current science says CCSVI is very likely a key part of the MS disease process and consequently needs to be treated as soon as possible. This is not a treatment which addresses symptoms but one which addresses a main driver. I am not surprised that many people are experiencing major improvements in their MS symptoms once CCSVI is relieved. I expect those with the pin in their backs would also enjoy some relief upon pin removal. Any time you counter a key part of a medical problem, from a bacteria which causes an ulcer, to immune suppression in autoimmunity, relief is to be expected. Claims that all the impressive improvements are simply “placebo effect” are also nonsense. They are just as real as the few cases of adverse effects.

Persons with MS are simply asking for a serious pathology (impaired venous flow from the brain), which science says is very likely to be a part of their disease process, to be corrected. To an objective observer, and hopefully to the media, this should be seen as a most reasonable request.

I also hope you can understand why pharmaceutical companies and those who receive substantial financial benefits from such companies (neurological community, MS Society), all of whom have much to lose from the introduction of CCSVI as a standard treatment, are strongly opposed to making CCSVI treatment available. Who can blame them? However, given their blatant and rather large conflict of interest, their opinions on this matter have to be weighed very carefully and seen in the light of the strong subjectivity they carry. Given that you are mouthing the same hollow arguments of those opposed to CCSVI, I have to wonder “who got to you”. A drug company, your favourite neurologist or perhaps a representative from the MS Society?

I hope this helps you understand why there is so much turmoil concerning CCSVI treatment. From an objective, scientific point of view, CCSVI needs to be treated anytime it is found. From a financial point of view, various factions are strongly opposed to such treatment. I hope some day the media gets at the real stories –1) science supports CCSVI treatment as soon as possible and 2) There is a war going on with the stakes being the physical health of persons with MS versus the financial health of drug companies, neurologists and national MS societies. Which is more important to our society? I know what side you two are on and it is not something you should be proud of. Beating up on persons with MS for financial reasons is as about as ugly as it gets. You are out doing the bankers in terms of a complete disregard for the values of our society.

I hope I have given you a broader perspective on CCSVI and the importance of treating it sooner rather than later. This issue will not go away until “the right thing to do” is done.

Sincerely,

Dr Ashton Embry
President, Direct-MS
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Postby cheerleader » Wed May 19, 2010 7:16 am

Thanks, Dr. E--
as always, articulate and on point. Appreciate your effort.
cheer
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Montreal Gaggette (because I'm gagging over their article)

Postby curmudgeonine » Wed May 19, 2010 8:57 am

Dr. Embry,

Thank you for speaking so eloquently and reasonably to the two authors of the insulting and, dare I say, abusive article.

You've become one of my new heroes. I am proud to have you standing up for those of us who need it the most.

You are to be commended.

blessings
Jeanine Baker
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Postby BELOU » Wed May 19, 2010 8:59 am

M. Embry,
Thank you for your time and efforts. If you want to translate some of your letters in french, let me know.
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Postby scorpion » Wed May 19, 2010 3:58 pm

Thanks Dr. Embry, Cheer, and Zap for pointing out that obviously Dr. Levy and Dr. Lang are in the pockets of big pharmas. Why else would they write this article? Just look at Montel Williams. As you pointed out Cheer, he will obviously be biased because of his connection to Pharmacy Choice which promotes the idea that nutritional supplements are the key to slowing or even stopping MS progression unlike Dr. Embry who has fought for years to get people to see that that nutritional supplements are the key to slowing or even stopping MS progression. Hey wait a minute......
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Postby zap » Wed May 19, 2010 4:14 pm

hmm, I just said I wonder who paid for it ... settle your pointy venom sticker, mister.

It certainly felt more like a deliberate hatchet piece than a fair examination ... but even if that's the case, of course there are those whose motivations for such things are psychological or personal, rather than financial.

Unfortunately, a rigorous scientific approach is the only way to ensure that a well-intentioned but likely ineffective treatment is not used to take advantage of a susceptible group of patients.


I love how MS stripped us all of our ability to evaluate evidence ... I guess that's why since diagnosis I have jumped, mouth frothing, upon the bandwagon of other hopeful cures, various quacks, as well as every "highly-touted" pharmaceutical cure that came along, tried to get my immune system knocked out, stem cell therapy ... oh wait ...

Actually I evaluated the evidence and found everything up til the CCSVI hypothesis unworthy, from Copaxone to bee stings.

Of course I know this all might turn out to be a false lead, and evaporate.

But I feel that it is better to err on the side of hope than on the side of ungrounded negativity, as you and the authors of this article - for whatever reasons - seem to prefer to do.
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Postby eric593 » Wed May 19, 2010 4:24 pm

scorpion wrote:Thanks Dr. Embry, Cheer, and Zap for pointing out that obviously Dr. Levy and Dr. Lang are in the pockets of big pharmas. Why else would they write this article? Just look at Montel Williams. As you pointed out Cheer, he will obviously be biased because of his connection to Pharmacy Choice which promotes the idea that nutritional supplements are the key to slowing or even stopping MS progression unlike Dr. Embry who has fought for years to get people to see that that nutritional supplements are the key to slowing or even stopping MS progression. Hey wait a minute......


LOL. I was actually waiting for cheer to pick this little missive apart as carefully as she tries to pick apart the opinions she disagrees with. There are plenty of places in this one where conclusions have been drawn and generalizations made, but facts to support those conclusions and statements are sadly lacking...

I'm also disappointed with yet more personal attacks on those with differing viewpoints. People are much stronger when they rely on facts as opposed to personal attacks when they disagree. It doesn't do the CCSVI cause any good when people continue to respond to those with a different opinion with, what amounts to, in effect saying: "oh yeah? Well, your mother is a ______________, so there!!". That's essentially what these attacks on ALL neuro's, big pharma, Montel, MS Societies, Teri Garr, etc. etc. is starting to sound like when these generalized attacks are made. Just a distraction from arguing the merits. Unprofessional. It's getting tiresome and is so not useful to furthering CCSVI research and testing and treatment. And it turns off even CCSVI supporters who want to focus on CCSVI, and are tired of the labels being placed on anyone who may be more cautious or who may disagree with what the research at the present time represents or indicates.

I think doubt at this early point is reasonable. That's why we need to be strong and continue efforts to move forward in strengthening research and discovering the facts behind CCSVI. Bashing those who disagree about CCSVI only makes the basher look bad, like they don't have a strong position to assert so they have to resort to personal attacks.
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Postby Trish317 » Wed May 19, 2010 4:59 pm

eric593 wrote:
scorpion wrote:Thanks Dr. Embry, Cheer, and Zap for pointing out that obviously Dr. Levy and Dr. Lang are in the pockets of big pharmas. Why else would they write this article? Just look at Montel Williams. As you pointed out Cheer, he will obviously be biased because of his connection to Pharmacy Choice which promotes the idea that nutritional supplements are the key to slowing or even stopping MS progression unlike Dr. Embry who has fought for years to get people to see that that nutritional supplements are the key to slowing or even stopping MS progression. Hey wait a minute......


LOL. I was actually waiting for cheer to pick this little missive apart as carefully as she tries to pick apart the opinions she disagrees with. There are plenty of places in this one where conclusions have been drawn and generalizations made, but facts to support those conclusions and statements are sadly lacking...

I'm also disappointed with yet more personal attacks on those with differing viewpoints. People are much stronger when they rely on facts as opposed to personal attacks when they disagree. It doesn't do the CCSVI cause any good when people continue to respond to those with a different opinion with, what amounts to, in effect saying: "oh yeah? Well, your mother is a ______________, so there!!". That's essentially what these attacks on ALL neuro's, big pharma, Montel, MS Societies, Teri Garr, etc. etc. is starting to sound like when these generalized attacks are made. Just a distraction from arguing the merits. Unprofessional. It's getting tiresome and is so not useful to furthering CCSVI research and testing and treatment. And it turns off even CCSVI supporters who want to focus on CCSVI, and are tired of the labels being placed on anyone who may be more cautious or who may disagree with what the research at the present time represents or indicates.

I think doubt at this early point is reasonable. That's why we need to be strong and continue efforts to move forward in strengthening research and discovering the facts behind CCSVI. Bashing those who disagree about CCSVI only makes the basher look bad, like they don't have a strong position to assert so they have to resort to personal attacks.


Yes, and those who bash Dr. Zamboni, Dr. Dake, and every qualified scientist who's been rearching MS and the vascular connection for almost 150 years, is guilty of the same thing.

Cheer counters unreasonable fallacy with scientific facts.
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