MS Society of Canada webcast on CCSVI -- text notes

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

Postby prairiegirl » Sun Apr 11, 2010 7:20 pm

...and I also wanted to thank Sandra (HC) for all of her postings and advocacy for CCSVI treatment. Much appreciated, from a fellow Canuck!
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Postby whyRwehere » Mon Apr 12, 2010 12:14 am

Eric,
It sounds like you don't know the answers about angioplasty followed by stenting. Well, you are fortunate, because I think the thread by Dr. Sclafani is still open for questions of this sort, and you could ask him: someone who knows and has experience.
I also hope the MS societies fund worthy research into CCSVI and don't waste the funding on backing neurologists who have already said that they think that CCSVI is akin to a "hoax" or likened it to snake venom. That would only give us very prejudiced studies. I support research by neurologists who HAVE shown interest and of course from IRs and Vascular doctor's who are much more experienced than neurologists in dealing with these issues.
Meanwhile, I think it is up to the patients, if they want to wait for a very long time for studies, which seem more important for the societies and the doctors' insurance, than for the patient who is on the verge of being permanently in a wheelchair or much worse. Personally, my family has decided not to wait and we are very comfortable making up our own minds and not being dictated to by the neurologists or the societies. Amen.
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Postby eric593 » Mon Apr 12, 2010 5:25 am

whyRwehere wrote:Meanwhile, I think it is up to the patients, if they want to wait for a very long time for studies, which seem more important for the societies and the doctors' insurance, than for the patient who is on the verge of being permanently in a wheelchair or much worse. Personally, my family has decided not to wait and we are very comfortable making up our own minds and not being dictated to by the neurologists or the societies. Amen.


I too am on the "verge of being permanently in a wheelchair", I could not describe my health more accurately than that. But I am a patient who wants studies because they are more important to ME than anecdotal evidence that is extremely selective and biased. It is not just societies and doctors' insurance who want studies, so please don't make sweeping generalizations that are just not true.

The Radeck's and Rici experiences, and those who go home and have no one to follow up with them or those who have a return of symptoms, and it is a fair number of people this is happening to... these raise enough red flags for me to want some objective research first, I simply cannot trust or rely on the testimonials at this point. I appreciate that we are all different and others are willing to jump in right now.

My post was simply stating my opinion that I don't want the MS Society to recommend CCSVI testing and treatment to all MSer's right now because there is no objective data to support such a recommendation and I think it would be the height of irresponsibility for them to do so. I have to add though that I'm not a fan of the MSS anyway, and I wouldn't give any recommendation they may or may not make any weight anyway. Their recommendation is simply based on their neurologists' point of view, and I wouldn't give that any more weight than my own neurologist's opinion, in fact I'd give the MSS's opinion a lot less weight. But I would have a huge problem if the MSS started making recommendations on treatments that did not have objective evidence to back it up. That was my point.
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Postby whyRwehere » Mon Apr 12, 2010 6:07 am

I welcome you to wait if you want, because you have to decide for yourself. I notice you did not ask Dr Scalfani about stents after balloning of the veins, but that is okay, because i have asked for you already.
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Postby Chrystal » Mon Apr 12, 2010 6:30 am

Good Morning Everyone,

Prairiegirl and whyRwehere thank you for taking the time to add your opinions also. Eric, I have to tell you that I didn’t sleep all night because I was too busy kicking myself for the “recommend” comment. As I said after the brain fog cleared, the MSS has no business recommending or advising for or against any treatment/procedure not now and not even after the years/decades?? of research they need/want to prove/disprove CCSVI. And yet they have been advising (which is recommending in a sense) against patients being tested and receiving treatment in Canada. WHEN ARE THEY GOING TO STOP THIS, RETRACT THEIR ADVICE…and simply state that it is the patient’s decision whether or not they wish to seek testing and treatment in Canada?

Part of the argument presented at the web-cast by the neuro was – there is no protocol and it is not being done here…well, most MSers there knew that yes, there is protocol and that testing was already being done in certain clinics (for a fee) and at least another one that has found a way to work around OHIP. We now know that the procedure has been done on 1 patient in BC and in Barrie, with success and positive results/improvements.

The naysayers doubting Thomases keep going on about the unknown long-term picture, possibility of veins closing up again and millions of other questions with unknown answers when speaking about CCSVI. And yet they obviously did not hold the drug treatments to the same standards and scrutiny.

We have now learned from the recent study about certain MS drugs…that there is no guarantee, no long-term or even short-term assurance on their efficacy – when given to patients with one type of MS rather than a second type of MS. Over the years, people were harmed and their condition became worse.

There are no life-long guarantees and assurances. If the powers-that-be didn’t expect them from the drug-treatments, why are they expecting them from a non-drug treatment? I keep hearing the Italian gentleman saying that in the last 3 years since he was liberated, he has forgotten what it is like to feel sick. 3 years is “long-term” enough for me. 3 good years is a million times better than living with more of the same from the last nearly 16 years.

I notice now that I didn’t explain my reference to Dr. Freedman's research receiving four million dollars (over six years) from the Canadian MS Society in 2000.
http://www.mssociety.ca/en/research/ste ... search.htm.

Is the MSS going to at least match this huge sum for the CCSVI studies they so want? Notice the double standard of this neuro – no problem receiving 4 million dollars over 6 years when he is researching his own theory, but doesn’t want money wasted researching a study put forth by a non-neuro (Dr. Zamboni). For him to call this a hoax or as he now says, "could turn out to be a hoax", and all the improvements “placebo”, talk about money going to waste in this research…and then with his team apply for a research grant to study it????? He should not be given the grant. He is completely biased, and I would not trust any results he produced. I think his study would be a waste of money.

And to think he and at least one other vocal naysayer (from the get-go) both sit on the Medical Advisory Committee of the MSS (see below), this makes me shudder.

Knowing that CCSVI is a vascular condition that is presenting in MS patients - ISN’T IT TIME vascular specialists were included on the Medical Advisory Committee of the MSS?

Medical Committees Membership 2009-2010
Medical Advisory Committee
Chair
Dr. V. Wee Yong, Calgary, Alberta
Members
Dr. Virender Bhan, Halifax, Nova Scotia
Dr. Joan Boggs, Toronto, Ontario
Dr. Samuel David, Montreal, Quebec
Dr. Anthony Feinstein, Toronto, Ontario
Dr. Mark S. Freedman, Ottawa, Ontario
Dr. Rashmi Kothary, Ottawa, Ontario
Dr. Luanne Metz, Calgary, Alberta
Dr. Trevor Owens, Denmark
Dr. Christina Wolfson, Montreal, Quebec
Dr. John Richert, National MS Society Liaison (USA)
Dr. Jack P. Antel, Montreal, Quebec (ex-officio)
Dr. Paul O'Connor, Scientific and Clinical Advisor (ex-officio)

I agree with Prairiegirl that the decision should be left to the patients. Patients are being forced to go out of the country when obviously everyone would prefer to stay local.

Take care and have a wonderful day, all.
God Bless,
Chrystal[/b]
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Postby eric593 » Mon Apr 12, 2010 6:31 am

whyRwehere wrote:I welcome you to wait if you want, because you have to decide for yourself. I notice you did not ask Dr Scalfani about stents after balloning of the veins, but that is okay, because i have asked for you already.


My questions were hypothetical since we don't have any data or research on angio or stenting of jugulars to look to for answers.
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Postby eric593 » Mon Apr 12, 2010 6:41 am

Chrystal wrote: As I said after the brain fog cleared, the MSS has no business recommending or advising for or against any treatment/procedure not now and not even after the years/decades?? of research they need/want to prove/disprove CCSVI. And yet they have been advising (which is recommending in a sense) against patients being tested and receiving treatment in Canada. WHEN ARE THEY GOING TO STOP THIS, RETRACT THEIR ADVICE…and simply state that it is the patient’s decision whether or not they wish to seek testing and treatment in Canada?


You and I are in agreement, Chrystal, I don't feel it is the MS Society's role to make any recommendations. They are comprised of neurologists and others on their board (or they seek out neurologists' opinions on certain issues). They aren't in any position to be putting forth recommendations as an organization, they don't "represent" us because we didn't vote them in as our representative body. They are an information provider and a research funder. That's why I think they are in a role to let us know whether there is any research into any particular treatment, but limit their remarks to information disclosure and not take a position on the merits of any treatment. Just give us the information, and fund promising treatments, especially when MSer's are demanding it.

That's why I also agree with you that they should be disseminating the new research that interferons may not be appropriate for all patients. I agree with you there too.
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Postby Chrystal » Mon Apr 12, 2010 6:49 am

Oh - another thing that upsets me...the repeated statement that MSers want all the research money directed at CCSVI, that we want all other avenues closed off and only CCSVI concentrated on. No.

I think most of us realize that CCSVI is a part of the MS puzzle - a significant part, and we want it to receive the same attention that the other "theories" received.

And considering CCSVI was not given its due consideration by the powers-that-be 30 years ago or even as recent as 3 or so years ago when Dr. Zamboni brought it to the surface again...perhaps more of the money pie is due for this area.

Take care, all.
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Postby Chrystal » Mon Apr 12, 2010 6:51 am

Just read your response, Eric. I agree with you wholeheartedly!!!

Take care and have a wonderful day.
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Postby whyRwehere » Mon Apr 12, 2010 10:40 am

eric593 wrote:
whyRwehere wrote:I welcome you to wait if you want, because you have to decide for yourself. I notice you did not ask Dr Scalfani about stents after balloning of the veins, but that is okay, because i have asked for you already.


My questions were hypothetical since we don't have any data or research on angio or stenting of jugulars to look to for answers.


Well, luckily (again) for you, the people who have decided they can not wait any longer are providing valuable data for the future.
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Postby eric593 » Mon Apr 12, 2010 3:39 pm

whyRwehere wrote:Well, luckily (again) for you, the people who have decided they can not wait any longer are providing valuable data for the future.


Unfortunately, any data that may be gleaned through individual treatments is of limited value to anyone else than the patient themself at this early stage and outside of the auspices of proper scientific method. Anecdotal evidence never replaces scientific method although it can certainly contribute to the knowledge base. But when you haven't had fundamental questions on efficacy answered, the data being collected is of extremely limited use. No context to place it in or extrapolate from beyond that particular patient.
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Time to ask the MS society a question

Postby Gordon » Mon Apr 12, 2010 4:00 pm

A friend once said to me, if you have nothing to hide, you hide nothing. tell the truth and you never have to remember your lies.

The qustion I ask the MS society is this

Why don't you open all your emails for an informational audit by MSers.

Gordon
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Postby whyRwehere » Tue Apr 13, 2010 3:27 am

Eric,
I know you want your studies done first for you, but anything that is interesting about different cases done before you will be spoken of here or from doctor to doctor, and then yes, the information is very valuable, despite not being data from the specific studies you speak of. Each paper written on the subject about cases builds up a wealth of knowledge...it is just a pity some people just do not want this to happen, and will then discount the papers and the helpful information being handed to them. Just because it wasn't in a study, or the study was too small, or the study wasn't done by neurologists, or the study wasn't backed by the MS society.....
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Truth edited out, in favour of untruth.

Postby Chrystal » Mon Apr 19, 2010 8:02 am

A link for their April 7th webcast is online now. I watched it yesterday (twice to be sure and had others also check this to verify) and noticed that they edited out the part where I corrected an incorrect answer given by their neurologist to an MS patient in the audience. They kept Dr. Murray's incorrect statement, though.

MSer ...Wendy had commented that Dr. M. kept mentioning the Buffalo results in comparison to Dr. Zamboni's more impressive results and she asked, Did the Buffalo study use exactly the same equipment that Dr. Zamboni used? Because you are comparing his results with the Buffalo results yet potentially if there's difference in the actual imaging equipment which could explain some of the difference in the results? (I believe it's at 3:10/9:30)

Dr. M responded, "But in fact they did..." (implying they did use the exact same equipment and still the results differed so).

As I've mentioned before, no one from the MSS - none of the key players - Pres., research or communication people or any other many present MSS staff member corrected this wrong statement or the many other wrong statements made throughout the webcast.

When I had the microphone, I addressed Wendy and the panel, and said that Dr. Zivadinov himself had stated that he hadn't used the same equipment or followed the same protocol as Dr. Zamboni and that could explain the differing results. (This was edited out. Gone.) A couple of people who had watched the webcast live, e-mailed me saying I should have seen the panel's faces when I corrected the wrong statement - unfortunately, that has all been wiped out.

The MSS also edited out my question about the recent Stanford study results that showed MS drugs to be helpful to some patients and harmful to others, causing a worsening of their condition. The moderator paraphrased my question and she and the neuro addressed only 1/3 of the question...while the MSS didn't address it at all. I brought in their "advice" that patients not receive CCSVI testing and treatment until further and larger research and trials are done...and asked if they would stop the drugs until further and larger research and trials (which are obviously needed now) are done? Will they tell newly diagnosed about these findings and not prescribe the drugs to them until more is learned?

Dr. M replied that they wouldn't stop the drugs because they have been helpful and proved beneficial to patients. He didn't speak of the patients that the drugs have been harming and making worse...don't they matter?

Pres. Mr. Savoie mentions during the webcast (3:04/8:05) that the patient voice is important. The MSS was involved in the recent 1st Canadian Patient Summit which took place in Toronto. The summit looked at the need to have the patient voice heard. Pretty sad that, just over a week after the Summit, a patient's voice (mine - which was speaking the truth) was suppressed and edited out.

Incidentally, 5 of us MS patients only stumbled upon the Summit thanks to a posting by the wonderful Sandra (UBC site) and registered with the main organizer.

I didn't think things could get more sickening and saddening.
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Postby happy_canuck » Mon Apr 19, 2010 9:54 am

Chrystal,

Did they not think we would notice their editing? Or maybe they think our memories are faulty?

We have so much discourse around the Q&A when it happened that we know they cannot change history. Boy, this sure smacks of re-writing textbooks (former classroom teacher here).

Do you mind if I take your words and post to our BC site (I am not using the "UBC" when I refer to it -- the name came as a result of the first group of us were UBC patients, but the site as a whole is much more about all of BC and beyond. Unfortunately, I can't change the name, but I changed the graphic).

~Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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