MS Society of Canada webcast on CCSVI -- text notes

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

Postby Chrystal » Thu Apr 08, 2010 9:30 am

Just wanted to add on here...Sandra, thankfully there were lots of non-simple MSers :) there yesterday, unfortunately time didn't allow for everyone to speak - and I apologize if my long-winded question didn't help matters.
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Postby Chrystal » Thu Apr 08, 2010 10:47 am

Giving the benefit of the doubt to Dr. Murray, perhaps as Carol S. has said on another site since - "he is not an expert in venous insufficiency"- perhaps he didn't have the correct information about Buffalo (all the more reason he shouldn't have been on the panel). He should have said he didn't know the answer if that was the case, rather than mis-inform anyone with incorrect answers to a number of questions.

And I realize that in all fairness to the MS Society staff, it would have put them in an awkward position to have to correct the expert they invited to be on the panel (which I still wish they had done, in the interest of patients, media, public, medical community, etc., etc., who would be listening/watching/reading details of the web-cast (again, all the more reason a vascular specialist who knows accurate information should have been on the panel speaking about CCSVI. Still no reason for any of them to be spreading the wrong information about CCSVI.

Giving the benefit of the doubt to Dr. Murray, perhaps as Carol S. has said on another site - since he is not an expert in venous insufficiency, perhaps he didn't have the correct information about Buffalo (all the more reason he shouldn't have been on the panel). He should have said he didn't know the answer if that was the case, rather than mis-inform anyone with incorrect answers to a number of questions.

Perhaps all this mumbo jumbo I have written is part of my cognitive-challenged brain and the compromised processing (some might say simple) that I have. What I am trying to say, people, is that I gave my view of what transpired, please don't make it yours especially because I have been wrong many times in my life.
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Postby welshman » Thu Apr 08, 2010 11:07 am

Thanks Happy C for putting up the "discussion thread" - we were not able to log on to the webcast (Maybe that wasn't such a bad thing !!!!)
due to travelling, and of course it's not on YouTube yet. We had e-mailed a question directly to Yves Savoie prior to our trip -
Q: If I indeed have blocked / collapsed veins, why should I not get treatment ?" It seems it was raised and the short answer on the thread was A: "we don't know the answer, half don't have collapsed veins and some normal people have collapsed veins".
Well there we go, that sure satisfies us !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
To Chrystal, I sure hope you are on the Board of your local MS Society,
they really need people like you to raise these points and I can only hope that Sandra will bring your questions to the UBC Research people.
Thanks to you both.
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Postby Chrystal » Thu Apr 08, 2010 3:17 pm

Thank you, Welshman, I hope Sandra will have a chance to raise the points I mentioned in a pm to her, pretty much what I wrote in my posts about the MS Society needing to be more responsible about ensuring that they, their people - staff, as well as experts they invite to speak, their website and their events (web-cast, etc.) are all dispensing accurate and truthful information - they owe this to the general public, but foremost, I would say, to MS patients (who they are advocating for) and the donating public. They also owe it to everyone to correct untruths and set the record straight, no matter how difficult, awkward and embarrassing it might be for them.

You know, after reading a comment by a "Mike" (who thought the web-cast gave thorough answers) on another site, I began to question my own "processing" of the whole web-cast and felt bad for asking him, "What web cast were you listening to?" Hence my subsequent postings that I had expressed my own views on what had occurred and I didn't want him or anyone to be persuaded one way or another by what I had written, because his opinion/view is as valid as mine and yours.

This afternoon, I found it very enlightening to view the many comments that had been posted on various sites during yesterday's live web-cast. I noticed that many held the same view that I did. So either we all have a "processing" problem, or we all simply expect to hear/read truths based on known facts - from experts who are speaking to the subject, whether or not they specialize on the subject. If the expert accepted the invitation to speak, they owed it to the audience to fully and accurately know what they were speaking to. We expect this from our advocates as well, who are as they say closely "monitoring" the developments and acknowledge their role is giving accurate info. And we expect these truths to reach the public - high on the list the donating public, who are often our very own family, friends, co-workers, acquaintances, etc..

That said, here is another new posting I was so flabbergasted to see. So much for letting us decide what we want to do.

http://www.facebook.com/pages/CCSVI-in- ... 0796282297
"Here's another little blurb from the MS Society saying they don't recommend we even get tested."
http://www.thespec.com/article/749828

As for me being on a Board - as it is, I was so stressed about yesterday's proceedings I didn't sleep at all and I have been off kilter all day. So no Board for me, and probably no more posting would be a good idea as well.

Take care and keep hopeful and positive.

God Bless,
Chrystal
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Articles & other Media Coverage of Web-Cast

Postby Chrystal » Thu Apr 08, 2010 4:20 pm

Message received from fellow MSer re media coverage of yesterday's web-cast...

As you all know, the MS Society hosted a web session yesterday on CCSVI and MS featuring Yves Savoie, Dr. Jock Murray and Karen Torrie-Racine. The session was well attended with over 1000 registrants from around the world watching the live web stream.

Media were also invited to attend the session resulting in a number of media hits:

CBC Toronto evening news (click to about 15 minutes): http://www.cbc.ca/video/#/News/Canada/T ... 1462849296
http://www.cbc.ca/health/story/2010/04/ ... forum.html
<shortened url>
http://ca.news.yahoo.com/s/cbc/100407/s ... csvi_forum
<shortened url>
http://telegraphjournal.canadaeast.com/ ... le/1010156
http://thechronicleherald.ca/Canada/1176080.html
http://www.cjbk.com/news/14/1112720
http://www.thespec.com/go/healthfitness/article/749828

More CCSVI coverage will air in the coming days as a major neurology conference is taking place in Toronto next week. CTV is running stories in the lead up to the conference. Yves has been interviewed for a piece and we expect it to air on the CTV National News this Friday night and during the day on Saturday newscasts. As well this Saturday, W5 will air a story on CCSVI as an update to their original feature from Nov 09.
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Postby jimmylegs » Fri Apr 09, 2010 4:04 am

i heard a little radio blurb on this while driving to/from work the other day. i have not gone through the web cast to look for inacurracies but i did notice that the interviewer was STILL talking "two deaths" and at least dr. murray corrected that statement by clarifying a bit on the two cases. the online account (2nd link above) is in slightly better shape, with lots of good reader comments.
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Postby Merlyn » Fri Apr 09, 2010 12:02 pm

Well, I watched this and I thought it was fairly balanced. There are major questions about CCSVI, and I thought they presented things in a manner that was cautious but why shouldn't they be? The relapse rate is discouraging, some people with MS don't even have the stenosis, and healthy controls have it. I filled out the survey at the end of this, and asked once again why they don't mention the fact that there is iron in the brains in other neurodegenerative conditions like Parkinson's, Huntington's, Alzheimer's...
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Postby Chrystal » Fri Apr 09, 2010 7:33 pm

Hello Jimmylegs and Merlyn,

Jimmylegs, sitting in the audience listening to the comments live...you won't believe how grossly loud the incorrect statements sounded to my ears. I wasn't expecting them, nor was I looking for them and was completely shocked as were others (MSers) I had a chance to speak with there. It was a cacophany of: "Did you hear what he said?" "Can you believe that was said?" "Didn't they read...", etc., etc.

Merlyn, you are entitled to your opinion and I’m sure there are others who agree with you.

In my humble opinion, this forum wasn’t planned to be balanced from the get-go, how could it be balanced when the selected panel itself was not balanced? Therefore, how could anything we heard be balanced? Still, I gave it the benefit of the doubt and went to listen for myself.

There was the president of the MS Society, a neurologist and patient with MS who all held the same view. There was no vascular specialist on the panel, and no patient representing all of us MSers who have read the facts from research, studies and first-hand accounts of liberated patients - and do not want to have to wait years just because the powers-that-be want to have a Canadian stamp on the whole thing. The addition of even just these two individuals would have added more balance to the panel.

I would have believed they were all being cautious and were truly looking out for MSers' interests (with regard to CCSVI), if they had presented the truth rather than incorrect statements about vital points concerning CCSVI throughout the web-cast and probably during the interviews that followed the web-cast.

The very fact that no one from the Society corrected the wrong statements and no one cared about presenting correct information about CCSVI to patients (over 1,000 worldwide watched), showed me that they and the panel preferred we all heard wrong statements which would strengthen their case. Their case being that…(paraphrasing a bit here) any improvements are all placebo effect, same equipment and protocols used in Dr. Zamboni’s study were used in Buffalo study that had less impressive results…more caution needed and clinical trials must be done, we’re as excited about this as you are, but we have to be careful…blah, blah, blah. etc., etc. (there was more).

After watching W5's first show and reading more, I believed it was plausible and that Liberation Procedure had in fact relieved some pretty debilitating symptoms of MS patients. The antics at this Wednesday's web-cast was just icing on the cake, I now believe.

Trust me, I so wanted to see the session as balanced and truthful. I have held our advocates in the highest regards and been so grateful that we have a group advocating on our behalf. I know they provide wonderful and very helpful programs and services for MSers. Everytime I have seen any one of them, I have thanked them from the bottom of my heart for all that they are doing on MSers’ behalf. I have told them how much strength it has given me (and no doubt other MSers) just knowing that we have such a group fighting MS along with us.

This is why the experience a few of us MSers had at another event and now at the web-cast came as such a painful shock and let-down - and quite literally, made me ill to my stomach.

On Wednesday, I couldn’t fathom how any of the many MSS key and regular staff present could sit through 2 hours listening to so many untruths that would affect patients’ understanding of this vascular condition as well as the procedure, and just not bother to speak up and make sure everyone was given accurate information. And then to later have one inform us incorrectly that "2 deaths" were caused by the Liberation Procedure, was just too much to take.

Who knows how many MSers and other interested parties have phoned their office for CCSVI information only to be told by other staff about 2 deaths and other incorrect details that only serve to justify their and their medical advisors' delay tactics like "more research studies, clinical trials...).

A sad and very shameful thing is that there are many MSers who have not had a chance to read the research for themselves (some who are also not online tracking updates) who came there or tuned in hoping for reliable information, which they now probably believe they received.

I’ve not been anxiously waiting for nearly 16 years to just desperately believe blindly in any treatment/procedure for MS that falls from the sky. I didn’t go to the web-cast hoping that I would only hear biased information totally in favour of CCSVI. I was prepared to hear whatever was said, either for or against CCSVI…as long as it was true and based on facts. That’s not what I or so many other MSers, who have commented on various sites, heard.

Even for next week's web-cast in Montreal, a neurologist is on the panel. No vascular specialist. Very sad. More of the same is on the agenda, no doubt.

Take care and God Bless.
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Postby Brightspot » Fri Apr 09, 2010 10:37 pm

Well said Chrystal!

Thank you for all of the effort you put into attending the event to provide some representation for those of us who could not attend.

Thank you also for the Very sad, but quite predictable report.

I have given up on the MS Society.

There is strong evidence that the MS Society cannot be relied upon to provide accurate information to members, the public, or governments regarding CCSVI.

I believe we should boycott all MS Society so called "CCSVI Information Sessions".

I will attend their walk in Vancouver as a spectator, and hand out some information sheets on CCSVI, to try to counter the deception.
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Postby Chrystal » Sun Apr 11, 2010 8:15 am

Brightspot, regarding the MSS and CCSVI - from what I've seen/not seen, heard/not heard, read/not read - I agree with you. They have held education sessions and printed booklets on how to live better with various MS symptoms which were helpful and appreciated...but here is a procedure that is helping lessen those very symptoms so we can live better!!!! Why wouldn't they want that for us now?

Do all the further studies alongside the treatments for those who have blocked veins. Allow and RECOMMEND the testing at the very least, and for those who have blocked veins and want the balloon angioplasty (which the doctor on W5 said was not dangerous!!) - allow and RECOMMEND that they have it. There are so many of us experiencing horrible headaches on a daily basis, overwhelming fatigue and other symptoms that could be the effect of the blocked veins. Why let us suffer these symptoms if we can have some relief and be more productive and useful in society?

The difference CCSVI has made in the quality of life for those who have already been liberated!! Even a small improvement is huge when we're talking about living with MS. No one knows what this illness is like unless they have lived it for themselves. I have tried to always focus on the positive, see the half-empty glass as half-full, look for the silver lining in the MS cloud, laugh about it, etc., etc....but it gets harder and harder every day.

I have slept most of the last nearly 16 years of my life away, thanks to overwhelming fatigue. Fatigue that affects my movements, coordination, thinking, speech, memory, concentration, hand-coordination, etc., etc. E-v-e-r-y-t-h-i-n-g basically starts shutting down as I grow more fatigued.

Because I don't always have "visible" symptoms, I hear, "You look fine!" And that's what people think about those of us with symptoms they don't get to see for themselves (cognitive, bladder (thank goodness they don't see), bowel (ditto on the bladder side comment), vision, pain, etc., etc.). MS destroys lives, bit by bit. And for the neuro on the latest W5 show to say in the extended interview clip..."For them to impose on us..." in reference to our pushing for CCSVI testing and treatment now, asap...????

First of all, about the research studies and clinical trials they say is necessary in keeping with the established process for science - why didn't they launch these years ago instead of just talking in their own MS circles about CCSVI, as their fellow neuro let slip in an interview. I can just imagine the talk that went on in those MS circles, "How do we bury this fast?" "Quick, someone look up how Schelling was stopped 30 years ago and we'll do the same!"

For someone to dismiss CCSVI and the Liberation Treatment as a hoax, grumble about the money being wasted on this research...and then submit his own application for a research grant to study it....!?!?!

Anyway, we know more and more clearly every day who is fighting with us and who is fighting against us on CCSVI.

Brightspot, thank you so very much for all the amazing work you have been doing to help CCSVI move forward here in Canada!!!!! You are wonderful!!!! Thank God we have you!!!!

Take care and God Bless,
Chrystal
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Postby Hope66 » Sun Apr 11, 2010 4:09 pm

Thank you for taking the time, effort and energy to post this Chrystal. It is truly appreciated.

be well,
Hope
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Postby Chrystal » Sun Apr 11, 2010 4:25 pm

Dear Hope (I LOVE your name!!!!!!!),

Thank you for your kind message.

I wrote from my experience with mainly invisible symptoms (at the moment). But the MSers who have lived daily and for years, with both visible and invisible symptoms - surely the neuro (from the interview) can understand the "push" for the Liberation Procedure and relief, at last.

Oh boy, I cannot even write a simple "thank you" without carrying on and on. Thank you again, Hope.

Take care, keep well, and keep HOPEful!!

God Bless,
Chrystal
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Postby eric593 » Sun Apr 11, 2010 4:58 pm

Chrystal wrote:Brightspot, regarding the MSS and CCSVI - from what I've seen/not seen, heard/not heard, read/not read - I agree with you. They have held education sessions and printed booklets on how to live better with various MS symptoms which were helpful and appreciated...but here is a procedure that is helping lessen those very symptoms so we can live better!!!! Why wouldn't they want that for us now?

Do all the further studies alongside the treatments for those who have blocked veins. Allow and RECOMMEND the testing at the very least, and for those who have blocked veins and want the balloon angioplasty (which the doctor on W5 said was not dangerous!!) - allow and RECOMMEND that they have it. There are so many of us experiencing horrible headaches on a daily basis, overwhelming fatigue and other symptoms that could be the effect of the blocked veins. Why let us suffer these symptoms if we can have some relief and be more productive and useful in society?

The difference CCSVI has made in the quality of life for those who have already been liberated!! Even a small improvement is huge when we're talking about living with MS. No one knows what this illness is like unless they have lived it for themselves. I have tried to always focus on the positive, see the half-empty glass as half-full, look for the silver lining in the MS cloud, laugh about it, etc., etc....but it gets harder and harder every day.

I have slept most of the last nearly 16 years of my life away, thanks to overwhelming fatigue. Fatigue that affects my movements, coordination, thinking, speech, memory, concentration, hand-coordination, etc., etc. E-v-e-r-y-t-h-i-n-g basically starts shutting down as I grow more fatigued.

Because I don't always have "visible" symptoms, I hear, "You look fine!" And that's what people think about those of us with symptoms they don't get to see for themselves (cognitive, bladder (thank goodness they don't see), bowel (ditto on the bladder side comment), vision, pain, etc., etc.). MS destroys lives, bit by bit. And for the neuro on the latest W5 show to say in the extended interview clip..."For them to impose on us..." in reference to our pushing for CCSVI testing and treatment now, asap...????

First of all, about the research studies and clinical trials they say is necessary in keeping with the established process for science - why didn't they launch these years ago instead of just talking in their own MS circles about CCSVI, as their fellow neuro let slip in an interview. I can just imagine the talk that went on in those MS circles, "How do we bury this fast?" "Quick, someone look up how Schelling was stopped 30 years ago and we'll do the same!"

For someone to dismiss CCSVI and the Liberation Treatment as a hoax, grumble about the money being wasted on this research...and then submit his own application for a research grant to study it....!?!?!

Anyway, we know more and more clearly every day who is fighting with us and who is fighting against us on CCSVI.

Brightspot, thank you so very much for all the amazing work you have been doing to help CCSVI move forward here in Canada!!!!! You are wonderful!!!! Thank God we have you!!!!

Take care and God Bless,
Chrystal


Chrystal,

I don't want the MS Society to recommend a treatment that doesn't have any valid blinded studies behind it (no matter how small) showing that it is effective. I think THAT would be unethical for them to make such a recommendation right now when we need more information first before a recommendation should be made.

For example - will angioplasty last? If there's a 50% restenosis rate, what is the rate of restenosis from re-angioplasty and what are the risks of THAT? What are the effects of angioplasty? Are those effects sustained? (we've read of many people who have initial improvements that are lost shortly after). If opening up the blockages help MS (which needs to be ascertained in a double blind study), are stents better than angioplasty? Can you HAVE stents put in after angioplasty? So, all these people having angioplasty now with a high risk rate of re-stenosis, are they precluding themselves from having enduring stents put in later (when they're developed) because they've had angioplasty NOW? (how mad do you think MSer's would be if they found out that stents are better, someone makes new stents that have no risk of migration but anyone having angioplasty now cannot have the better stents later on because their vein walls have been stretched with angioplasty so the stents won't hold?? They would be stuck because they rushed in without waiting until at least SOME unbiased knowledge base was developed.

So no, I don't want the MS Society to make any recommendations until we have a LOT more information on 1) efficacy 2) safety. That is their obligation to make recommendations based on FACTS not hype. Patients may go ahead based on hype and this "crowd effect" that happens when groups congregate and fuel one another, give one another false courage and a false sense of security, but I want my MS Society to be more logical, rational and critical about what they will and won't recommend. There are too many things that don't pan out - we'd be dead by now if they recommended everything that "looks good" along the way and we rushed in and tried it. Remember the gamma interferon trial that looked good in earlier phases of clinical trials but ended up worsening MS in a larger double blinded trial. A lot of MSer's would have been a LOT worse if we all went ahead and convinced our doctors to give it to us because it looked good early on and we didn't wait for the trial results. What if the MS Society had recommended Tysabri before the clinical trial was completed and no one even KNEW there was a risk of PML? There would have been a lot more dead/brain damaged MSer's if we hadn't waited until after the trial to discover there was a very serious infection risk which changed a lot of our minds about even taking it. We would have turned against the MS Society in fury (and sued them) if they had recommended it to us before the trial was completed and we discovered this risk of PML.

Do I want the MS Society to fund a lot more research and not start at the mouse phase with CCSVI? Yes. I want them to move swiftly doing some preliminary work. Do I want them to recommend testing and treatment of MSer's at this time? No. I want them to fund the research that will give us the data to make informed decisions based on FACTS on whether this will make a difference in our lives or not and what the risks are.

Because I tell you, a LOT of MSer's would be SCREAMING if the MS Society were recommending angioplasty now and something catastrophic turned out to be a side effect of it. I mean, what if hundreds of people received stents and the majority of them migrated to the heart like Radeck's? People say they're willing to take the risks until the worst happens to THEM, and then their health turns out even worse than before and suddenly they are looking for someone to blame. Rational and reasoned thinking must prevail here at some point.
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Postby Chrystal » Sun Apr 11, 2010 6:05 pm

Eric, I am so very glad that you wrote and called me up on the "RECOMMENDING" bit. I was so completely and utterly wrong and don't know where my head was when I wrote that. You are right. The MS Society has no business RECOMMENDING or ADVISING AGAINST ( which in a sense is recommending against, and they have been doing this, as was said on an imaging centre's site...) any procedure/drug treatment, etc. They should not be recommending for or against anything. Like Mr. Savoie said himself, part of their role is to provide the information but the patients must decide.

Many of us have decided, based on factual information we have sought out ourselves, and thankfully has been shared by caring people like Cheerleader and the others.

The MSS do have a duty to provide timely and accurate information, which they very obviously didn't at the webcast, as noted by so many MSers who have been reading everything on CCSVI. And patients should be allowed to decide for themselves what they want without being stopped because the government is waiting for them and their medical advisors (neurologists) to give the "okay".

Because they have been advising against both CCSVI testing and the procedure, I asked my question at the web-cast: "Given the concerns about CCSVI expressed by the MS Society and it’s medical advisors (various neurologists), to MS patients, the government, media, medical community, imagine labs, etc., I want to know will the MS Society and it’s medical advisors now exercise the same concerns with respect to the latest news of another study’s results that made the news on March 29th? (The news that certain drugs have proven harmful to patients with one type of MS and actually made their condition worse.)

I wanted to know if they would advise patients not to go on these drugs (and even stop these drugs) until larger studies and trials were done to find a way to identify which type of MS a patient has and which drug would be more effective. The neuro said they wouldn't stop people from taking the drug because they have been helped...he didn't even bother addressing the ones who are probably being harmed and getting worse because of the drug or the newly diagnosed patients (will they be given information about the latest study results????) The president from the MSS didn't even address my question regarding the society's advice following this drug update in the news. I took the non-answer as agreement with the neuro.

They don't want patients tested or treated for CCSVI until Canadian trials and studies are done. And yet they don't want to advise against drugs that are harmful to one group of MS patients until trials and studies are done. Double standards for drug treatments and non-drug treatments. In fact, the wonderful Joan (Cheerleader) has posted online:
CCSVI in Multiple Sclerosis Dr. Freedman's research received four million dollars (over six years) from the Canadian MS Society in 2000.
http://www.mssociety.ca/en/research/ste ... search.htm. Are they going to at least match this huge sum for the CCSVI studies they so want?

I concede, I was wrong to say "recommend" because truthfully, I would never want MSS to recommend for or against anything, knowing now that they cannot be bothered with current or factual information if it doesn't support their stance.

I was talking about wanting balloon angioplasty, not stents. The drugs are not effective for years for everyone...there are no guarantees with them...what about all their harsh side effects (the harshest - death itself). Why the need for long-term guarantees with balloon angioplasty when there's obviously no long-term guarantees with the drugs?

I agree that rational and reasoned thinking must prevail - in the minds of both patients, physicians and the MSS. So must honesty.

Take care and God Bless,
Chrystal
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Postby prairiegirl » Sun Apr 11, 2010 6:56 pm

I have enjoyed reading your posts Chrystal, and agree with your reasoning regarding double standards for warnings re CCSVI treatment vs. warnings for drug treatments. Thanks for taking the time to post all of the information and your reflections.
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