MS Society members 'break ranks' and try treatment

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

MS Society members 'break ranks' and try treatment

Postby erinc14 » Wed Oct 13, 2010 6:26 am

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Postby PointsNorth » Wed Oct 13, 2010 8:39 am

My opinion:

All I know is that when you mention the name "Zamboni" to your MS Neurologist, their veins bulge out of the side of their heads. I don't think this is a big pharma conspiracy but rather Neurologists (some of whom sit on MS Society Advisory Boards) having their way of life threatened e.g. Freedman fearing that money could be diverted away from his precious studies. The neurologists lean on the MS Society and voila. Zamboni has been identified as a foreign body and the neurologists are the immune response which must be summoned to mop things up and bring our universe back into harmony.

What does everyone else think???

The Society chapter prez I speak to seems quite nice but he/she is careful not to break with party lines. I've questioned why there are no vascular people on there advisory boards and I'm told that ONE has been appointed, presumably to placate the savages (people like me) . . . . so they can sit on boards where they are outnumbered by neurologists 10 to 1. How stupid does the MS Society think we actually are??

PN
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Postby Cece » Wed Oct 13, 2010 9:43 am

PointsNorth wrote:All I know is that when you mention the name "Zamboni" to your MS Neurologist, their veins bulge out of the side of their heads.

:D
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Postby erinc14 » Wed Oct 13, 2010 12:19 pm

it's a 150 year cover-up.
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Postby drbart » Wed Oct 13, 2010 12:24 pm

PointsNorth wrote:All I know is that when you mention the name "Zamboni" to your MS Neurologist, their veins bulge out of the side of their heads.


You had me worried a second there, but since you said "veins" I am reassured, because there is No Way that venous flow can have any influence on brain function.
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Postby fogdweller » Thu Oct 14, 2010 11:40 am

erinc14 wrote:http://www.ctv.ca/CTVNews/Health/20101012/ms-society-101012/


I watched this and it was very unsatisfying. The interviewer was understandably tough, but there were good answers to all his questions and she didn't give them. I know not everyone is a skilled examinee, but I couldn't help wishing I could have been there to answer.

the MS societies strong statement that there was a total lack of evidence for the efficacy of this procedure is understandable..there have not been any really good double blind studies of the length and detail required by the scientific community to prove efficacy. Frustratingly, one of the reasons is that the MS society and IRBs are avoiding giving permission to do studies based on this same lack of evidence, and statements like this one steer researchers and research dollars away from this very promising area for research.

Also, there is a great deal of antedotal evidence. That is not good scientific evidence, but it is evidence of a sort. And, of course, all scientifi evidence is pursuing an interesting theory brought to light originally by antedotal evidence.

The most important question, which she in honesty did not answer, was why the community is making statements like that, what would motivate them. I believe that it is a matter of being a complet change of direction in thinking, which would require them to admit that they have been barking up the wrong tree for 40 years. Proud professionals are loath to do that.

Most MS research right now is financed by the pharmaceutical inudstry, so most MS experts have at least some of their livlihood tied up in the current thinking about what causes the disease, and of course there is a huge amount of money at risk if the current drug regimes were abandoned, which naturally creates a strong prejudice against some new theory like the CCSVI theory.

PointsNorth wrote:My opinion:

All I know is that when you mention the name "Zamboni" to your MS Neurologist, their veins bulge out of the side of their heads. I don't think this is a big pharma conspiracy but rather Neurologists (some of whom sit on MS Society Advisory Boards) having their way of life threatened e.g. Freedman fearing that money could be diverted away from his precious studies. The neurologists lean on the MS Society and voila. Zamboni has been identified as a foreign body and the neurologists are the immune response which must be summoned to mop things up and bring our universe back into harmony.

What does everyone else think???

PN



I am not cynical enough to think it is a conspiracy or even an intentional thing. In his movie, "An Inconvenient Trth" Al Gore made an prescent comment.."I have never been able to convince someone that something is true when his livelihood depends on his believing it is not true." I think that is at play here. Also neurologists are a proud lot and probably loath to admit theyl have been barking up the wrong tree for 40+ years, and were not the ones to find the important next discovery.
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Postby 1eye » Thu Oct 14, 2010 1:20 pm

fogdweller wrote:Also neurologists are a proud lot and probably loath to admit theyl have been barking up the wrong tree for 40+ years, and were not the ones to find the important next discovery.


I think that profession has a hard road ahead on account of certain vocal representatives. I was just listening to Alistair McLeod on the radio and I think I would agree. If you release something for public consumption, it is 'out there' forever. Nothing you can do. For good or ill.

Maybe this ECTRIMS will help
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby LauraV » Fri Oct 15, 2010 10:12 pm

From Fogdweller
I am not cynical enough to think it is a conspiracy or even an intentional thing. In his movie, "An Inconvenient Trth" Al Gore made an prescent comment.."I have never been able to convince someone that something is true when his livelihood depends on his believing it is not true." I think that is at play here. Also neurologists are a proud lot and probably loath to admit theyl have been barking up the wrong tree for 40+ years, and were not the ones to find the important next discovery.


I don't feel sorry for these guys. They're prima donnas. They should be setting aside those big egos and act like the professionals they are supposed to be. As doctors and men of science they have an obligation to "do no harm" and to consider all possible options for improving the health of their patients. To just dismiss an idea because you haven't thought of it or it threatens you in some way is stupid, but for a doctor it is unethical. Maybe Zamboni doesn't have ALL the answers but it's obvious he has at least SOME of them. If these guys were smart they would get in the game, and begin to at least explore the possibilities and collaborate with vascular docs and IRs to learn. Instead they stick with their lame ways of "managing" their patients' disease. If MS is proven to be what we think it is "a vascular condition that results in neurological symptoms", they could be working WITH IRs and vascular docs to improve the health of their patients. The way they are acting now I think they risk being left out in the cold and it would serve them right.
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Postby concerned » Fri Oct 15, 2010 10:41 pm

1eye wrote:
fogdweller wrote:Also neurologists are a proud lot and probably loath to admit theyl have been barking up the wrong tree for 40+ years, and were not the ones to find the important next discovery.


I think that profession has a hard road ahead on account of certain vocal representatives. I was just listening to Alistair McLeod on the radio and I think I would agree. If you release something for public consumption, it is 'out there' forever. Nothing you can do. For good or ill.

Maybe this ECTRIMS will help



Really, what sets neuros aside in the ego department, except for the fact that one invented the concept as we know it?

How are IR's immune to this Enlarged Ego Syndrome?
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Postby sbr487 » Fri Oct 15, 2010 11:06 pm

LauraV wrote:If these guys were smart they would get in the game, and begin to at least explore the possibilities and collaborate with vascular docs and IRs to learn.


To that extent the Beirut study is important in that it leaves behind 'ccsvi exists?' behind.
I think long term question is which comes first?
But short term - does fixing ccsvi help MS symptoms?

And remember some of the highly crediable names (Zivadinov, Bakshi ...) are from neuro field. I think as more information comes out, hopefully the buy in will start ...
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
- Max Planck
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Postby erinc14 » Sat Oct 16, 2010 6:31 am

i hope one day soon there will be lawsuits for personal injury for allowing persons with ms to be further crippled and even die when neuros could have attempted a rescue .
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