New article from Ashton Embry

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New article from Ashton Embry

Postby cheerleader » Sun Dec 20, 2009 8:04 pm

Dr. Embry wanted to make sure the TIMS folks saw his recent article. It's thanks to folks on here (Sharon and others) he came on here, read about CCSVI, delved into Dr. Zamboni's research and decided to find "The Cheerleader." He put me in touch with Avis Favaro.

Thanks for using your position to speak out, Dr. Embry-

http://www.direct-ms.org/magazines/Hope ... lation.pdf

Hope and Elation - Frustration and Anger – Fear and Loathing:
The Contrasting Emotional Responses to the Revolutionary
Discoveries in MS Made by Dr Zamboni

Dr. Ashton Embry


The beautifully crafted, CTV documentary on the astounding findings of Dr Zamboni and his team for multiple sclerosis has hit the MS community like a tidal wave and has evoked a variety of emotional responses. Most people with MS see CCSVI as a huge breakthrough for understanding and treating MS and had an initial feeling of unbridled elation that finally there was some real hope for an effective treatment on the horizon. I expect most people with MS thought “I have to get my veins checked out!”, even before the credits rolled on the Zamboni documentary.

Such a reaction is completely understandable. Dr Zamboni’s research leaves very little doubt that most people with MS have impaired venous flow from the brain and that such a problem is caused by narrowings and outright blockages in the main veins which drain the brain. To anyone with a semblance of objectivity, this is a “no drainer”. I might note that small studies in Poland and at both Stanford and the University of Buffalo in the
USA have already confirmed these findings. The University of Buffalo is now doing a very large study to add further confirmation. I would be willing to bet the farm that this study will validate Dr Zamboni’s findings and, most importantly, it will silence the vocal skeptics, many of whom are neurologists with a blatant conflict of interest regarding the emergence of a potentially effective, non-drug treatment.

I have noticed from discussions with numerous persons with MS over the past few weeks that the initial feelings of excitement and hope have been replaced in many cases by anger and frustration. This has come about because everyone is finding it impossible to get an MRV to determine if they indeed have venous blockages. In Calgary, one person I was speaking with called every private imaging clinic and got no where. The receptionist at each clinic simply read a prepared response they had gotten from Alberta Health that there is not enough evidence to warrant such a scan. I quote from a November 26th email from the manager of one clinic “Until we get further instruction … we don't feel that ethically
we can institute these scans for patients”. Always nice to know the Alberta government is out there making sure persons with MS do not find out if they have a serious venous problem or not.

I have spoken to a few dozen persons with MS and each one expressed their burning desire to find out if CCSVI affects them and if so, how badly. And each one was very angry and frustrated that there was no way they could get such an important test done. The fact that the government substantially contributed to the problem only made them angrier.

When it comes to fear and loathing, I expect these feelings are being harboured by other constituencies of the MS community, namely the MS clinicians, researchers, drug companies and charities. Why would such pillars of medicine fear and hate CCSVI? Regarding the clinicians, I have no doubt that they quickly realized that, if relief of CCSVI is an effective treatment, especially for the newly diagnosed, then they would essentially be cut out of the action when it comes to treating MS patients. Once a person was diagnosed with MS they would be immediately be referred to a vascular specialist who would then oversee the person’s treatments. It would be “diagnose and adios” for the neurologists, a somewhat ironic development given that is how the neurologists used to treat MS patients before the advent of MS drugs in the mid-90s .

As far as the MS researchers go, I can definitely empathize with them. I have been involved in research for over 40 years and I know, if someone suddenly demonstrated that I had spent the last 40 years barking up the wrong tree, I would have a variety of intense, negative feelings. One thing that has never been mentioned is how the Zamboni results demonstrate that the EAE animal model, which is widely used in MS research and
upon which 10s of millions of dollars are spent every year, is clearly not suitable and is almost worthless. The mice do not develop CCSVI and thus the EAE model is no better than an animal model in which the mice developed CCSVI but no CNS lesions. A viable animal model for MS needs to exhibit both phenomena – end of story. Such a realization will cause great gnashing of teeth in the wide world of MS research.

It is also not a stretch to predict that fear and loathing in the MS research community will turn to anger and I hope Dr Zamboni is prepared for some blistering attacks on both his work and his character. Hell hath no fury like a researcher proven wrong or disenfranchised. Finally, I won’t belabour the fears and anger of both the clinicians and the researchers regarding the potential loss of all that drug company largesse and research money which has been a bonanza over the past 15 years.

That brings us to the drug companies that supply the drugs that currently are used to treat MS or are in development. I have no doubt these companies must be having hand- wringing meetings these days to discuss the threat of a potentially effective, non-drug treatment for MS. The boardrooms must reek of fear and loathing when the obvious
implications of the Zamboni discoveries are discussed. The bottom line is that there are tens and possibly hundreds of billions of dollars at stake in the foreseeable future and the drug companies are not going to let that kind of serious cash simply disappear without a fight. It is impossible to predict how the companies will deal with this real threat to their
bottom lines and stock prices but you know it is not going to be pretty.

Finally I suspect there is a lot of fear and loathing going on at the national MS societies in the countries with high rates of MS (e.g. Canada). For the MS Society of Canada this has been a public relations disaster which potentially will translate into a loss of revenue. The most obvious, embarrassing aspect of this fiasco is the fact that MSSOC wasn’t even
aware of the Zamboni research until mid October when they put up on their website a few, pathetic paragraphs on CCSVI that were cribbed from NMSS. They had absolutely no plans to fund any research on CCSVI until the CTV documentary put a gun to their head and they then hastily cobbled together a press release (in which Dr Zamboni’s name was mis-spelt) and issued a call for CCSVI research proposals.

The big question is why, with their blue-ribbon scientific advisory board, did MSSOC have no clue about CCSVI when papers on the subject began appearing in 2006 and major contributions were publicly available in late 2008 and early 2009. Were all their scientific advisors asleep at the switch? Assuming these renowned researchers read the scientific literature, do they have they the ability to recognize a watershed contribution when it crosses their desk? The fact CCSVI went unnoticed by MSSOC for more than a year is cause for serious concern about the competency of the organization in terms of providing reliable and timely scientific information to their members. What other important information is currently out there going unnoticed by MSSOC and its scientific advisors?

To sum up, Dr Zamboni’s amazing and groundbreaking discoveries have induced a wide variety of emotions in the different factions of the MS community. Such emotions are going to make it even harder for his findings to be properly tested and, if proven to be correct, to be incorporated into clinical practice. Regardless, it is important to realize that such strong emotions exist and to be cognizant of the different and somewhat antagonistic views and goals of the two groups that comprise the MS family – those that live with MS and those that live off MS.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Johnson » Sun Dec 20, 2009 8:33 pm

Thank you Joan, and thank you Dr. Embry, from the core of my soul.

The big question is why, with their blue-ribbon scientific advisory board, did MSSOC have no clue about CCSVI when papers on the subject began appearing in 2006 and major contributions were publicly available in late 2008 and early 2009. Were all their scientific advisors asleep at the switch? Assuming these renowned researchers read the scientific literature, do they have they the ability to recognize a watershed contribution when it crosses their desk? The fact CCSVI went unnoticed by MSSOC for more than a year is cause for serious concern about the competency of the organization in terms of providing reliable and timely scientific information to their members. What other important information is currently out there going unnoticed by MSSOC and its scientific advisors?


Good question.

And thanks so much MSSOC, all the great neurologists at the UBC MS Clinic, for letting my hell go on for another 3 years, when you ought to have known better. How many years more must I and my compatriots suffer and deteriorate while you holiday in the Cote d'Azur, and eat lobster bisque at your conferences? Bastidges.
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Postby nicko » Sun Dec 20, 2009 8:48 pm

If this truely was known for years and they did not act. They should be liable for pain and suffering for how many MS sufferers?? C'mon time for a class action.

That letter gets to the point in so many ways.
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Postby Salvatore24 » Sun Dec 20, 2009 9:59 pm

I'm not going to condemn the opposers of CCSVI, nor do I think anyone should stress and get worked up about it. I will let the research and clinical trials speak for itself.
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Postby Ruthless67 » Sun Dec 20, 2009 10:11 pm

Ashton wrote about folks being turned away from imaging centers as if that were a bad thing…..well, I’m not so sure about that at this point in time. I mean why should people throw out what is potentially thousands of dollars for tests to be done by folks who’ve never heard of CCSVI or even how to properly scan for it?
I think at this point we need to find out how to get the names and contact information on the folks who are taking the scanning procedure training in Bologna. I believe I read that the courses were 3 weeks, so we should start having our first set of graduates heading back home real soon. Wouldn’t it be wonderful if we knew who they were and where they were going.
I believe also that a well informed MS patient or advocate along with an inquisitive and interested doctor could get the correct protocol together, you have to be persistent like Joan. Miracles do happen and we can help make them happen too. When we find more Doctor’s like Dr. Dake, willing to help MS patients with proper CCSVI treatment, we all need to be sure and have them added to the “Big Names in CCSVI” sticky so others can find them too.
I’m afraid lots of misinformed MS folks are going to find someone in the meantime to accommodate them for a fee……….We really all need to be patient enough to receive scans by properly trained personnel and not be skimmed by professionals with no or incomplete understanding of CCSVI and how to test for it.
There’s always graft, greed etc. at any “Gold Strike” and don’t kid yourself, that’s what CCSVI means to some people, the same caliber folks as those who are now poised to lose as much.
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Postby Johnson » Sun Dec 20, 2009 10:24 pm

I believe I read that the courses were 3 weeks, so we should start having our first set of graduates heading back home real soon

I read 3 days...

False Creek Surgical (or whomever) could spend $10,000 on getting someone properly trained, and make it back +++ in a matter of days.

You are absolutely correct about people flocking to anyone who has an ultra-sound, or MRI machine though. But why, oh why ought it take 2-4 years? Every hospital or clinic that has anything to do with MS folks ought to have imaging staff being trained right now, let alone 3-4 years ago, or 2-4 years hence. The vascular surgery is nothing new (well, not really...) to any vascular surgeon, interventionist...

I am not angry, so much as disgusted with the foot-dragging (no pun intended), and I think we all ought to be.
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Postby MrSuccess » Sun Dec 20, 2009 10:27 pm

well said Ruthless - it would be wise to be on guard for those claiming to be of help .....for a fee.

It might be best to sit tight for about 3 months. Let everything unfold .




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Postby cah » Sun Dec 20, 2009 10:33 pm

Quite telling that there isn't a single thought or question in this article that wasn't thought/asked here already. Though it sums up very well what's going on emotionally, I don't like this article. Nothing good comes out of it. It just heats those emotions where some of them should be overcome instead. Blaming anybody for anything of the past doesn't help anything and just puts up the fight, leaving the neurologists no way to go on with it without losing their face. Maybe that's just what they deserve, but for those suffering from MS, any other option than a long, hard fight would be more helpful I think, deserved or not.
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Postby sbr487 » Sun Dec 20, 2009 10:45 pm

It is pretty clear that these fancy MS societies have completely failed to deliver. I mean, what kind of a organization we are talking about in which the MS patients have to introduce them to new research findings. I think the best thing at this point is for the govt. to take over these and start cleaning from top to bottom ...
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Postby Johnson » Sun Dec 20, 2009 10:55 pm

Blaming anybody for anything of the past doesn't help anything

I have to agree with that, cah. I regret if what I wrote seemed like blame, or recrimination. However, it most certainly tries my trust in many of these people. It reinforces my view that we can really only trust ourselves, and take responsibility and action for ourselves.

If these people have known of this for years without acting, why ought I accept a GP refer me to the MS clinic again, when I ought to be referred to someone who will actually do something? I've been going SP for the last half-year or so, and I am taking the reins from here.
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Postby cah » Sun Dec 20, 2009 11:31 pm

Johnson, you have any right to distrust based on your personal experiences. But I think there's a big difference between your personal views, even if you state them here, and a published article.

I assume there are enough neuros out there who aren't corrupted by pharma money or anything, and were just happy to have just anything they could do for their MS patients. If you lump them together with the "other" ones, then even the "good" ones can but fight for their profession. You know what I mean?

I've told the story of my father being hemophiliac and got a liver transplantation here. Recently, I found a summary of a congress of surgeons back in 2007. The most interesting thing was a speech about transplantation in hemophiliacs, being widely unknown that this is even possible. That was 15 years after my father had his surgery!!! There's no possible benefit for anyone to inhibit this knowledge. So, the conclusion must be that there is a failure in the system of spreading information on professionals.

What we should do is to overcome this failure by informing anybody concerned. What we shouldn't do is to rub it in, unless somebody reacts in a way that deserves it.

Compared to my fathers case, ms societies reacted quite quickly.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby Johnson » Sun Dec 20, 2009 11:42 pm

What we shouldn't do is to rub it in, unless somebody reacts in a way that deserves it.


Again, I agree with you cah. I surely hope that I do not seems to be tarring any and all with the same brush.

I have no thoughts of retribution, or blame, but I do say to get the Harare out of my way, and do not be obstructionist, to all medicos that I have had contact with concerning CCSVI so far.
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Postby ozarkcanoer » Mon Dec 21, 2009 6:32 am

Ashton Embry wrote :

"Finally, I won’t belabour the fears and anger of both the clinicians and the researchers regarding the potential loss of all that drug company largesse and research money which has been a bonanza over the past 15 years."

I am so glad that Ashton Embry contacted cheer. And I am also dumbfounded by the lack of response to CCSVI by all the MS societies and the negative remarks by a couple of MS researchers in the press. I was even upset by the 2-4 years to treatment that Dr Zivadninov spoke about in the Buffalo newspaper.

With all that said, I want to defend the many MS clinicians who are being vilified. I like and respect my MS neurologist. He runs clinical trials. He is not quite on board yet with CCSVI. I also like and respect the many neurologists who are MS researchers. They are just human beings who need to be convinced and I believe if/when the evidence is there that they will be convinced.
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Postby patientx » Mon Dec 21, 2009 6:48 am

For a man who has spent 40 years in research, he sure makes many baseless statements.
I might note that small studies in Poland and at both Stanford and the University of Buffalo in the USA have already confirmed these findings


How can he know this, unless he is privy to information no one else is?

many of whom are neurologists with a blatant conflict of interest regarding the emergence of a potentially effective, non-drug treatment.


He's gotten on board all right - with the ridiculous notions that, if a cure for MS is found, neurologists will not be able to find any other work.

how the Zamboni results demonstrate that the EAE animal model, which is widely used in MS research and upon which 10s of millions of dollars are spent every year, is clearly not suitable and is almost worthless.

This statement is particularly ironic, since, in one of his papers, Zamboni himself cites the EAE model as support of his theories.
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Postby MaggieMae » Mon Dec 21, 2009 7:07 am

I fear that MSrs will be tested for CCSVI by clinic and hospitals that do not know how to correctly follow the protocol for a doppler or MRV. Some will pay out of pocket because they want help now. Some will be told that they do not have CCSVI because the test were not done properly. Some (like my husband) will have their insurance charged $9,000 for the wrong tests. This could be a real nightmare.
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