Just thinking...........
Posted: Tue May 03, 2011 10:30 am
In an attempt to reduce the passion of this discussion I have remained silent for a few days.
Cheerleader posted:
Mark, We agree. My husband still takes copaxone. There is some type of immune involvement (as there is in stroke and neurodegenerative disease), and he is dealing with his MS with diet, exercise, pharma, supplements and blood flow. So far, so good. No MS progression, no relapses, only symptom relief. Neither Marie nor I have ever said CCSVI angioplasty is a cure.
We agree, however the 'MS liberation' message is still widely circulated on the net. It is hurting our message to get the symptoms of CCSVI treated in pwMS. The cause of MS is unknown. Unless CCSVI advocates state robustly that MS etiology probably multifactorial and we should treat all the symptoms including immune system, CCSVI, vitamin imbalances etc we will be labelled as the lunatic fringe by main stream medicine. Extreme CCSVI zealots are damaging Prof Zamboni's work, he has often repeated to stay on DMD. I will keep opposing people who say DMDs are all bad for all pwMS.
Cheerleader posted:
Neither has Dr. Embry. Neither have any of the doctors researching venous blood flow. We just want to make sure the research continues without the "editorializing" displayed by Dr. Zivadinov last week. His comment that MS could be the cause of CCSVI seemed politically motivated, given the timing of that press release while he was at the neurology convention...
Welcome to the world of science as a rough, tough business, where money rules. Both Embry and Zivadinov are guilty of "editorializing" and playing to their audiences. CCSVI treatment advocates need to say "so what" to Zivadinov and ask him if that means he recommends that no symptoms are treated ??
Mrhodes40 posted:
.....the title of my book "CCSVI as the cause of Multiple sclerosis the science behind the controversial theory" is descriptive of what genre of material is evaluated in the book, it is not a scientific conclusion of course because my book isn't "research" but reference. THIS IS IMPORTANT: THE TITLE IS CHOSEN BY THE PUBLISHER.
Marie, you were trapped by a publisher in their choice of the title, nasty situation. I guess you have learnt how devious publishers are. They just want sales. However your book is being taken as a definitive statement by many CCSVI supporters. If you want critical feedback I suggest you do not approach CCSVI researchers in the future.
Mrhodes40 posted:
Will everyone like the book? No of course not. I am making the argument FOR CCSVI... what is the scientific basis for the CCSVI association with MS?---in other words, if you are Dr Schelling or Dr Zamboni what are the references you are looking at and what do they say?
I question the need for CCSVI patient advocates to argue for CCSVI. Why not just let the CCSVI experts do that ?? I guess there are years of argument ahead. I recommend CCSVI patient advocates focus on getting symptoms treated. This helps pwMS.
My main question remains:
Q: What is the cause of MS ???
A: No one knows.
Until we do know, treating symptoms is our only option. That will mean that DMDs make high profits for big pharma and some IR/VSs charge a lot for inexpert de-stenosis. That's capitalism.
Trying to provoke thinking.
MarkW
Cheerleader posted:
Mark, We agree. My husband still takes copaxone. There is some type of immune involvement (as there is in stroke and neurodegenerative disease), and he is dealing with his MS with diet, exercise, pharma, supplements and blood flow. So far, so good. No MS progression, no relapses, only symptom relief. Neither Marie nor I have ever said CCSVI angioplasty is a cure.
We agree, however the 'MS liberation' message is still widely circulated on the net. It is hurting our message to get the symptoms of CCSVI treated in pwMS. The cause of MS is unknown. Unless CCSVI advocates state robustly that MS etiology probably multifactorial and we should treat all the symptoms including immune system, CCSVI, vitamin imbalances etc we will be labelled as the lunatic fringe by main stream medicine. Extreme CCSVI zealots are damaging Prof Zamboni's work, he has often repeated to stay on DMD. I will keep opposing people who say DMDs are all bad for all pwMS.
Cheerleader posted:
Neither has Dr. Embry. Neither have any of the doctors researching venous blood flow. We just want to make sure the research continues without the "editorializing" displayed by Dr. Zivadinov last week. His comment that MS could be the cause of CCSVI seemed politically motivated, given the timing of that press release while he was at the neurology convention...
Welcome to the world of science as a rough, tough business, where money rules. Both Embry and Zivadinov are guilty of "editorializing" and playing to their audiences. CCSVI treatment advocates need to say "so what" to Zivadinov and ask him if that means he recommends that no symptoms are treated ??
Mrhodes40 posted:
.....the title of my book "CCSVI as the cause of Multiple sclerosis the science behind the controversial theory" is descriptive of what genre of material is evaluated in the book, it is not a scientific conclusion of course because my book isn't "research" but reference. THIS IS IMPORTANT: THE TITLE IS CHOSEN BY THE PUBLISHER.
Marie, you were trapped by a publisher in their choice of the title, nasty situation. I guess you have learnt how devious publishers are. They just want sales. However your book is being taken as a definitive statement by many CCSVI supporters. If you want critical feedback I suggest you do not approach CCSVI researchers in the future.
Mrhodes40 posted:
Will everyone like the book? No of course not. I am making the argument FOR CCSVI... what is the scientific basis for the CCSVI association with MS?---in other words, if you are Dr Schelling or Dr Zamboni what are the references you are looking at and what do they say?
I question the need for CCSVI patient advocates to argue for CCSVI. Why not just let the CCSVI experts do that ?? I guess there are years of argument ahead. I recommend CCSVI patient advocates focus on getting symptoms treated. This helps pwMS.
My main question remains:
Q: What is the cause of MS ???
A: No one knows.
Until we do know, treating symptoms is our only option. That will mean that DMDs make high profits for big pharma and some IR/VSs charge a lot for inexpert de-stenosis. That's capitalism.
Trying to provoke thinking.
MarkW