Are patients distorting the science?~Marie Rhodes

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

Just thinking...........

Postby MarkW » 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
Last edited by MarkW on Tue May 03, 2011 12:45 pm, edited 1 time in total.
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Postby 1eye » Tue May 03, 2011 12:16 pm

Oh, give it a break? Do you speak now for all CCSVI researchers or only most of them, when you say "If you want critical feedback I suggest you do not approach CCSVI researchers in the future." Have they signed a Unanimous Researcher's Declaration that they will never give Marie any critical feedback unless she stops approaching them?

As far as her choice of title goes, I think if it sells more copies, better for the publisher, better for the sales. Might even break even. Good that a knowledgeable writer is out there, to oppose the cacophony from the periodical and pulp fiction science news.

I'll be waiting to buy yours when it comes out.

Am I on Candid Camera? Is this here just to keep this thread alive?
"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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Prof Zamboni's Statement

Postby MarkW » Wed May 04, 2011 8:52 am

For those who wish to hear about causative factors of MS:

PRESS RELEASE
Some clarifications concerning inaccurate news spread by the media, with special reference to Dr Zivadinov’s study published in the April issue of Neurology.

CCSVI is by full right to be included among the causative factors of MS since it was found in 60% of the pediatric forms of MS.

The published data - disclosed in 2010 – were already then regarded as confirming data.

For this reason the data need to be interpreted in a different way.

Prof Zivadinov‘s findings do not prove Prof Zamboni‘s work wrong, contrary to what other sources have incorrectly reported to the media. Instead, his data strongly support the fact that – in a multifactorial perspective largely accepted by all scientists - CCSVI is by full right to be included among the causative factors of MS, since it was found in almost 60% of the pediatric forms of MS and in almost 40% of the subjects with Clinically Isolated Syndrome (Cis). Clearly, being present in most pediatric forms, it is difficult to consider CCSVI as a consequence of MS.

Press Office: Francesca Rossini Manfredini - Laboratorio delle Parole
Tel. +39-051-0950120 – Mobile +39-335-5411331 or +39-331-6752354 – francesca.rossini@laboratoriodelleparole.it

1eye posted:
Oh, give it a break? Do you speak now for all CCSVI researchers or only most of them, when you say "If you want critical feedback I suggest you do not approach CCSVI researchers in the future." Have they signed a Unanimous Researcher's Declaration that they will never give Marie any critical feedback unless she stops approaching them?

When scientific papers/research work is reviewed it is given to opposing scientists for review (standard practice for leading journals). I trust that Marie understands my point:
if she wants critical feedback I suggests she does not approach CCSVI researchers in the future, rather ask for feedback from auto immunity proponents or CCSVI naysayers.

Trust that is clear for most people.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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