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PostPosted: Thu Sep 30, 2010 7:33 am 
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http://www.facebook.com/DIRECTMS#!/note ... 0270924147


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PostPosted: Thu Sep 30, 2010 7:56 am 
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To help rectify the serious problem of the close-minded negativity of the MS neurological community, Direct-MS is offering to help fund five MS doctors to visit CCSVI treatment centres. This will provide an opportunity for the doctors to see for themselves the reality of CCSVI, the safety and ease of CCSVI treatment, and the types of improvements enjoyed by some after the treatment. MSSC is invited to join this necessary and potentially game-changing initiative.

This is an absolutely excellent idea. I don't see how a doctor/researcher could turn this down without confirming the "closed-minded negativity" criticism that has been leveled.


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PostPosted: Thu Sep 30, 2010 8:26 am 
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Direct-MS is offering to help fund five MS doctors to visit CCSVI treatment centres.


Dear Dr Embry,

How will this offer be presented?

Thank you, thank you so much for your dogged efforts.

Take care,
pCakes


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PostPosted: Thu Sep 30, 2010 8:27 am 
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Direct-MS wrote:
http://www.facebook.com/DIRECTMS#!/notes/direct-ms/close-minded-negativity-by-ms-doctors-does-not-equate-to-scientific-skepticism/157720270924147


I am not sure why this is such an issue. I mean if you do not think neurologists will help your MS don't go to one. By all means go to a vascular doctor or spend your money on one of Mr. Embry's books that has a list foods and supplements that he claims will stop the progression of your MS. As far as the the arguement about neuros impeding the progress of CCSVI that is just silly. There are numerous studies taking place across the world and of course we have the all important anecdotol information being reported by patients daily. If someone, say for example, hated the "establishment" becuase their own personal research has never been accepted by "them" that would be another story all togethor but come on, this neuro bashing garbage is just misdirected anger.


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PostPosted: Thu Sep 30, 2010 9:15 am 
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I would suggest extending an offer to MS Society leaders as well. They are powerfully influenced, and powerfully influential.


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PostPosted: Thu Sep 30, 2010 10:30 am 
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Come on, guys, give Dr. Freedman a break. He is seeing his entire career's work rebooting and all you expect from him is a healthy skepticism ... too bad ...

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A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
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PostPosted: Thu Sep 30, 2010 11:26 am 
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sbr487, I hope that was tongue in cheek humour, or maybe you are just playing Devil's Advocate :wink:

scorpion, again I think you might be playing the Devil's Advocate, but you got my attention with your comments. To some extent I agree that "bashing neuro's" is not the way, in most cases our LOCAL NEURO's are good guys doing their jobs and are indeed trying to help their patients, but you really need to distinguish between the good guys at our local MS Clinics and the higher echelon who consider themselves the true "specialists and researchers". This latter Group are the doctors like Freedman who guide (maybe mis-guide would have been the better word) the MS Societies, who sit on research groups that lead (maybe miss-lead) Government through the process of funding.
Now I don't know where you're from scorpion, but your comments that if your Neuro won't help, then don't go to him are somewhat silly, I live in Canada, we have an MS Clinic at our local hospital where there are 2 Neuro's working with each other - you really think it's that easy to change ? The next Centre with an MS Clinic is a 5 hour drive, you really think that's a good option ?
And finally your comment that it's silly to think that neuro's are impeding the progress of CCSVI. Again in the "local" sense you are right, an example is my wife's local neuro who didn't disapprove of her considering going for treatment, he said what a lot of us believe that we need to see trials to prove the benifit. But it's the "higher echelon" the people like Freedman, like Dr Jock Murrey, these neuro's are not only impeding the progress they don't want to even consider it as a possible option.

As far as Ashton Embrey's essay regarding the negativity of the leaders of neurological science (at least in Canada), he is 100% right, and I cannot wait to see if any of the people he named and indeed the MS Society of Canada will respond and take him up on his offer. He has certainly put them on the spot and I think that's exactly what needs to be done.


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PostPosted: Thu Sep 30, 2010 1:07 pm 
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Can someone help me out here....Dr. Coyle is my neurologist. I changed dr. last year when my NYC top expert poo-pooed CCSVI. When I researched CCSVI, I came to find that she is part of the study with other dr's. I haven't had the ccsvi discussion with her yet, but am I reading this right, she doesn't believe in ccsvi? Help me....I am confused


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PostPosted: Thu Sep 30, 2010 1:22 pm 
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Direct-MS is offering to help fund five MS doctors to visit CCSVI treatment centres.

I like this idea!!!


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PostPosted: Thu Sep 30, 2010 1:22 pm 
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patticake66 wrote:
Can someone help me out here....Dr. Coyle is my neurologist. I changed dr. last year when my NYC top expert poo-pooed CCSVI. When I researched CCSVI, I came to find that she is part of the study with other dr's. I haven't had the ccsvi discussion with her yet, but am I reading this right, she doesn't believe in ccsvi? Help me....I am confused


Hi Patty-
I met Dr. Coyle in Bologna last year, she was an invited guest, but is still very skeptical and not part of any study or research into CCSVI. You probably saw her name as part of the conference. Other attendees, including Dr. Eliot Frohmann and Dr. Gary Cutter were invited, and remain outspoken critics of CCSVI. They are not part of any formal study, either.

As far as Ashton Embry receiving any money or selling books...his Best Bet Diet and all of his nutritional information and research are available on his site for FREE-
http://www.direct-ms.org/
Dr. Embry's only connection to all of this is his son who has MS, had CCSVI, was treated and is recovering. As any of us who are parents understand--there is nothing more precious than our child. Dr. Embry does this for his son and other pwMS. No money necessary. If you don't agree with him, don't read his posts.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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PostPosted: Thu Sep 30, 2010 4:48 pm 
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Cheer,
Thanks for the information. But see what I just found out from another site, which has this info posted one year ago, is that Dr. Coyle is very excited about ccsvi and is trying to get the ir' s at Stonybrook University to do the testing. This woman spoke the the Dr. herself. See how confusing info can be. See how info changes from site to site. By the way, in the article, close-minded negativity, Dr. Coyle is regarded as a neurologist in upstate NY....incorrect...it is downstate....Long Island to be exact. I appreciate your help.


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PostPosted: Thu Sep 30, 2010 10:39 pm 
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I am not sure why this is such an issue. I mean if you do not think neurologists will help your MS don't go to one.


Actually, I live in the USA and the only IR I have found who does CCSVI testing and treatment within 500 miles of my home requires that I have a referral from a neurologist to be able to have the CCSVI angioplasty procedure.

This IR has a long waiting list of people with MS who can't move forward with treatment because they can't find a neurologist willing to refer them.

So...

Neurologists have quite a lot of power, and their closed mindedness is highly relevant. IMHO...

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PostPosted: Thu Sep 30, 2010 11:32 pm 
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Thank you for everything.


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PostPosted: Fri Oct 01, 2010 12:49 am 
welshman wrote:
... Now I don't know where you're from scorpion, but your comments that if your Neuro won't help, then don't go to him are somewhat silly, I live in Canada, we have an MS Clinic at our local hospital where there are 2 Neuro's working with each other - you really think it's that easy to change ? The next Centre with an MS Clinic is a 5 hour drive, you really think that's a good option ?

Scorpion didn't suggest to go to another neurologist, he suggest to go to vascular doctor instead:
scorpion wrote:
...I mean if you do not think neurologists will help your MS don't go to one. By all means go to a vascular doctor ...


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PostPosted: Fri Oct 01, 2010 12:57 am 
ThisIsMA wrote:
...Actually, I live in the USA and the only IR I have found who does CCSVI testing and treatment within 500 miles of my home requires that I have a referral from a neurologist to be able to have the CCSVI angioplasty procedure.

This IR has a long waiting list of people with MS who can't move forward with treatment because they can't find a neurologist willing to refer them.

So...

Neurologists have quite a lot of power, and their closed mindedness is highly relevant. IMHO...


It's not "neurologist power" issue. It's just good excuse for IR not to take a risk and responsibility on themself.


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