This Is MS Multiple Sclerosis Community: Knowledge & Support

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We must learn our limits. We are all something, but none of us are everything.
GuRu
RRMS Dx 07/09

when they say "additional funds" to CCSVI research...would that be over and above the paltry "$100,000 for 2 yrs" that they have allocated to these projects....

Yet the article forgets to mention how much is actually spent additionally in CCSVI research. Or how few, to be exact. It's unbelievable. They hinder diagnosis and treatment, they don't believe in it. But that doesn't stop them from exploiting it in public relations.

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"There is only one good, knowledge, and one evil, ignorance." Socrates

I hope people are giving directly to CCSVI projects such as the McMaster study........the MS society hasn't stepped up to the plate. I keep seeing their mandate...a cure will come; it's just a matter of time. I think they hope it will be "a long time away".....unbelievable behaviour, I didn't think they could be that two-faced....they do great work but now when something this promising is in the works they play games with "our money" .....total bs.

The bar has been now set by the Canadian MS Society. Everyone will compare total non-CCSVI research grants to CCSVI research grants. If they are planning on short-changing CCSVI research this announcement will come back to bite them. I wonder who is setting their PR strategy.

From that web page somewhere, I got -

"On May 5, MS Society volunteers will present carnations to Members of Parliament as they enter the House of Commons with advocacy meetings taking place on both May 5 and 6."

Isn't that nice? Perhaps we protesters should present them with something too. Bribery with flowers? How about coffee cups with CCSVI on them? Or tickets on a door prize of a lawn mower...? That's in season too... I've got it! We present the Parliament of Canada their own DA-DA-DA-DAAAA! Zamboni machine! To be shared among all political parties involved in real hockey games.

OK who can put up the PayPal link?

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

the way I read it, ....this 6.7 is all going towards existing research programs..... nothing here for CCSVI research


which leaves us with the paltry amount of $200,000 mentioned earlier

that's how I read this and by the way 500K goes to a Yale researcher for
B cell work. I have made a formal complaint to Toronto head
office to get the money back. The only explaination for the
award was that they wanted to entice him into the field.
Worse is that Rituximab has been used in some human trials
and I don't believe the results were good enough to warrant
more time or effort but I will recheck all the publications.

I just got a link from CTV and in the FAQ on Liberation there was this

"Canadian studies so far will only study the diagnosis of CCSVI and the link to MS. No treatment studies are planned at the moment. The MS Society says it will not fund any treatment studies until the theory has been proven and the link to MS confirmed."

This doesn't sound like it is moving quickly at all!!!!

The MS Society also posted criteria for study one of which is a blinded study where neither the patient nor the clinician knows whether they did or didn't recieve the treatment. How do you do that with the liberation treatment ????

here is the link for CTV

http://www.ctv.ca/servlet/ArticleNews/s ... ?s_name=W5

How many centres in North America are planning studies on CCSVI?

We are aware of four in the U.S: Georgetown University, Boston Medical Center, The Institute for Vascular Health and Disease in Albany, N.Y., and the Buffalo Neuroimaging Analysis Center. Some are testing the association between CCSVI and MS. Others are also proceeding to treatment studies.

Canadian studies so far will only study the diagnosis of CCSVI and the link to MS. No treatment studies are planned at the moment. The MS Society says it will not fund any treatment studies until the theory has been proven and the link to MS confirmed.

In Canada, three centres have publicly announced plans for studies: the University of British Columbia, the University of Saskatchewan (study is in conjunction with UBC), and St. Joseph's Hospital / McMaster University in Hamilton.

There are other groups that have applied for funding from the MS Society of Canada but the recipients of those grants won't be announced until June.

Rialynn,

Dr Dake will be doing a treatment study at Stanford on the proper techniques for treating CCSVI venous malformations !!!! We have the very best guy for the job.

ozarkcanoer

Rialynn -your post has given me mixed thoughts on the MS Societies position on CCSVI research funding. Although I still feel strongly that they should award research funding for CCSVI investigations .... I now see how they may want to go forward with great caution.

In all reality ...they could with justification ...ask ... What's CCSVI got to do with MS ? Why should we - the MS Society - pay to study a vascular problem that may-or may not involve MS people ?

Herein lies the problem.

Another big hurdle to overcome are the results of so-called healthy controls. Yes , they have narrowed veins ....but do not have MS. I assume their MRI's are clear . But answer me this . What happens if so much as ONE healthy control goes on to develope MS ....and the medical world HAD KNOWLEDGE that correcting their blood flow would protect their brain ? And did nothing. That troubles me greatly.

MS Societies - Do the right thing ... fund those CCSVI investigations proposed by legitimate CCSVI researchers. Get those Trials underway as fast as possible .



Mr. Success

What has been seeming undisputable is that those MS patients that have CCSVI and have undergone the liberation procedure has had a positive effect.

The only criteria should be is that the patients are MS and they have CCSVI. Rather than researching is there a link, but what does treatment do for patients with MS, What are the benefits??? Then once there is treatment find out what the Link is....

We get treatment for vision loss, walking, Bladder infection before we look for a link to MS. This is no different.

The MS society Canada has a Webcast talking about there position and funding of CCSVI research Yves( President or chairman of MS Society canada and Ontario) said the question on most of their members minds was how will I be in 5 years/10 years after the procedure.

I don't know about anyone else but since I was diagnosed 12 years ago I have been coping and living in the moment I don't make long term plans,unless it is a Dr appointment. I don,t walk our dog other then on the treadmill so I don' t have to worry about how I am getting home or how long I have to sleep before I recover.

We need large treatment trials and follow us afterwards...... as the moment it precious..... and the damage can be permanent........ let my body try to regenerate NOW. That is what the MS society should be doing.

You would think that it would be undisputable (and it certainly meets the bar I required before I stopped thinking it over and started looking for someone to treat me for CCSVI) but without hard evidence, it is very much being disputed. Thus the controversy....

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

If it is indeed true that "The MS Society says it will not fund any treatment studies until the theory has been proven and the link to MS confirmed." then it needs vigorously opposing. But it mentions here:

http://nationalmssociety.org/research/r ... x?nid=2206

that 'Treatment and Research' will be pursued. Treatment is also mentioned further down the page.

We need to know which statement is correct. If it turns out that all the funded research is aimed at different ways of expressing the connection between CCSVI and MS then there is a very strong chance that we will get a jumble of different figures which will be used to muddy the waters as Zivadinov's figures were. [/url]