MS Society of Canada'a "advice" to Labs???

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

Postby Chrystal » Wed Apr 07, 2010 5:55 am

-time supporter of the MS Society, I am disheartened by their stance on CCSVI. Yes, they've offered grant money for studying CCSVI...better late than never, considering Dr. Jock Murray in an interview says himself that CCSVI was known and talked about in MS circles years before it hit the news.

Yes, they say they're excited about this latest news...but their people show pure disdain when speaking about it, to the point that the interviewer also comments on their surprising demeanor...I'm referring to and interview by CBC's Mark Kelley.

They say they are monitoring CCSVI closely, but their government relations person only knows of 1 study ever done.

I don't understand their caution that patients not even get tested, "for safety reasons".

Someone has to ask this question, please...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, imaging 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?

“For safety reasons”, have the MS Society of Canada and their neurologist medical advisors begun "advising" patients to stop their drug treatments until scientists and researchers can replicate the study that revealed there might be 2 types of MS, and certain drugs that are effective for one type have actually proven harmful to patients with the other type of MS, making their condition worse?

Have the MS Society and their neurologist medical advisors begun (if not, when will they begin) actively advocating for the prescribing of these drugs to cease immediately, until larger studies have confirmed or refuted these latest results, so as not to put patients at risk of being placed on a drug harmful to their type of MS, as we now know has been done to countless patients for the past many years? Are newly diagnosed patients been advised not to begin any of these drug treatments?

When will cautions and warnings about these drug treatments be posted on the MS Society website?

Are they only concerned with “protecting” us from CCSVI? Do they not care about “protecting” us from drug treatments which they now know can be causing more harm than good to many patients?
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Postby Hockeydad » Wed Apr 07, 2010 6:16 am

Are you going to be on the MS Society's webinar today? You can ask the questions then, if you are.
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Postby Chrystal » Wed Apr 07, 2010 6:18 am

Hi, I am going to be there and will definitely try to ask this question. Thanks.
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Postby Hockeydad » Wed Apr 07, 2010 9:39 am

U Rock! I just watched/heard you ask your question. Wait until you see the play back, the look on some of their faces are amazing.
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Postby Chrystal » Wed Apr 07, 2010 3:59 pm

Thank you, Hockeydad. I wish I hadn't become emotional, but I couldn't believe the incorrect information Dr. Murray was giving with so much authority.

It looks like the answer to my question was...we operate with double standards. We are only interested in protecting MS patients from non-drug treatments (CCSVI procedure), so we will not be advising patients to stay away from drugs that we now know are only meant for patients with 1 type of MS and not the 2nd type of MS (whose condition will actually worsen with the drugs).

<shortened url>
For many, MS drugs not helpful, study shows
By Rob Waters
Bloomberg News / March 29, 2010

http://pagingdrgupta.blogs.cnn.com/2010/03/
March 29, 2010
Scientists find there may be two forms of multiple sclerosis

I also couldn't believe the comments that MS patients were so excited about CCSVI because it was "simple" to understand???? We are not simpletons. Everyone I have talked to has spoken of the logic, the sense this makes.

I had submitted a question to the MS Society of Canada when I first registered, and had my hand up to ask this as well when it wasn't addressed: Since CCSVI is a vascular condition, shouldn't the speaker panel have included a vascular specialist who has read up on the research and studies done by Dr. Zamboni and others???

Also wanted to ask Dr. Murray: In an interview with CBC, I believe it was, he said that CCSVI was known and talked about in MS circles for over a year-and-a-half, before it hit the news. In fact, Joan Beal first wrote to Dr. Murray in December of 2008, telling him about CCSVI and expressing her hope that some of the Canadian research money might be allocated to venous insufficiency...so why did it have to take patient pressure following the W5 and the Globe and Mail stories to get the MS Society of Canada finally moving on this? Who exactly was in the MS circles he refers to that were talking about CCSVI during all that time and were then surprised when it hit the news?

<shortened url>

link to the Jock Murray interview. <shortened url>

Mr. Savoie said that the role of the MS Society is to provide timely, accurate info so patients can make the right decision, not to make the decision for us. Thanks to W5's timely and accurate info MS patients were finally able to hear about CCSVI. Since then,- many of us have read the research, studies, as well as overwhelmingly positive feedback from already liberated patients and we have decided we want CCSVI testing and treatment in Canada, but we cannot even get proper testing because (as we now have seen) on the Canadian Magnetic Imaging site, "The MS Society of Canada has advised that 'For safety reasons, the MS Society does not recommend that people with MS be examined or treated for CCSVI outside of an established research protocol'. Until such a time as this changes, CMI will not be offering the imaging techniques used by Dr. Zamboni as we support and respect what leaders in the field are advising.”

The government people have said they are waiting for the medical profession to give the okay, but everyone seems to only be listening to neurologists…even for today’s web-cast on CCSVI to only include a neurologist and not a vascular specialist is insulting to patients’ intelligence (oh, I forgot, they think we are all simpletons and wouldn’t see this as ridiculous and a total waste of time geared to offering incorrect and biased information). With what little energy we have, we dragged ourselves to the web-cast which was just a ruse.

Sorry for ranting. I am so completely disheartened, as I told several Society people who asked me.
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Post Web-Cast

Postby Chrystal » Thu Apr 08, 2010 5:43 am

I have to preface this message by saying again, that I have been a long-time supporter and "fan" of the MS Society, fundraiser, WALKer, volunteer, speaker with a parent who has been a research partner for years. As I sat through the live web-cast yesterday afternoon, I grew more and more disheartened and later sickened.

When a patient brought up the Buffalo studies in which the results differed (and were less impressive, as naysayers are so eager to point out) from Dr. Zamboni’s results, she asked if the same equipment had been used and the same protocols followed as in Dr. Zamboni’s study. Dr. Jock Murray, the neurologist, lied in response. Too harsh? Okay, he told a fib. No, he is a learned man, an author…a facts man.

All the other naysayers that I have heard, have conveniently omitted the truth – that Dr. Zivadinov, himself, stated that they had not used the same equipment or followed the same protocols which could be why the results differed so. But not Dr. Murray, he lied and said “yes”, that the same equipment had been used and the same protocols followed.

Until the time when I had my chance to speak and tell the truth, NO ONE corrected Dr. Murray. I don’t mean fellow patients. I mean MS Society of Canada staff who have said they are closely monitoring CCSVI developments and reiterated yesterday, that their role is to give timely and accurate information. It would have been very timely to correct the wrong statement immediately and give the accurate information.

But no – neither the president, nor the patient on the panel (who is very active on the Board and at her chapter, is excited and hopeful about CCSVI and even speaking to fellow MSers about it as she mentioned) – they were sitting there with microphones right in front of them and could have set the record straight right away. Even the MS Society of Canada’s research people, their communication people and the many other staff members who were there – did not, in the pure and simple interest of ensuring that only accurate information was being imparted to present media (because Lord knows, some of the media has been spewing untruths at every chance they get) to the patients who they are supposed to be advocating for, did not correct Dr. Murray and speak the truth.

Dr. Murray spoke other untruths, and again no one from the MS Society of Canada corrected him and relayed true facts. The wonderful lady beside me and myself kept raising our hands, wanting to correct the lies each time, but were never selected again to speak (fair enough because other MSers deserved a chance to speak)....which is all the reason why MS Society staff should have been the ones setting the record straight for patients' sake, media's sake and the public's sake.

My long-winded question referred to a statement on the Canadian Magnetic Imaging website that says “the MS Society of Canada has advised that ‘For safety reasons, the MS Society does not recommend that people with MS be examined or treated for CCSVI outside of an established research protocol’. Until such time as this changes, CMI will not be offering the imaging techniques used by Dr. Zamboni as we support and respect what leaders in the field are advising.”

My actual question – given the concerns about CCSVI expressed by the MS Society and its medical advisors (various neurologists), to MS patients, the government, media, medical community, imaging labs, etc., I want to know will the MS Society and its 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?

“For safety reasons”, have the MS Society of Canada and their neurologist medical advisors begun “advising” patients to stop their drug treatments until scientists and researchers can replicate the study that revealed there might be 2 types of MS, and certain drugs that are effective for one type have actually proven harmful to patients with the other type of MS, making their condition worse? Have the MS Society and their neurologist medical advisors begun (if not, when will they begin) actively advocating for the prescribing of these drugs to cease immediately, until larger studies (which they want done for CCSVI) have confirmed or refuted these latest results, so as not to put patients at risk of being placed on a drug harmful to their type of MS, as we now know has been done to countless patients for the past many years? Are newly diagnosed patients being advised not to begin any of these drug treatments? You’re stopping testing and treatment of MS because you say further work needs to be done. Clearly further work needs to be done regarding drug treatments currently in use, are you stopping them?

I guess my answer was: We operate with double standards. We are only interested in protecting MS patients from non-drug treatments (CCSVI procedure), so we will not be advising patients to stay away from drugs that we now know are only meant for patients with 1 type of MS and not the 2nd type of MS (whose condition will actually worsen with the drugs). Dr. Murray said they will not stop people from taking a drug that is helping them. Good answer, doc. But what about the people the drug is actually harming? Don’t you care about them – or do they not matter? What about the newly diagnosed – you didn’t talk about them – will you be putting them on a drug knowing that they could be part of the group where the drug can worsen their condition? And back to not stopping people from taking a drug that is helping them.

Doc. Murray, why can’t you apply your simple reasoning above to the liberation procedure which has been helping many people? You and the other panel members were excited about the internet and the wonderful postings of news and how up-to-date we MSers were…have you not been reading liberated patients’ first-hand accounts? Oh, you think “placebo” effect…only when speaking of the Liberation Procedure…interesting that you never think “placebo” effect when speaking of drugs. I just listened the other day to another interview where a gentleman says that for the past three years since his liberation, he has forgotten what it is like to feel sick. That’s what we want!!! Forgive me, doc, if after 15 ½+ years of “living” with MS, I am sick of being sick.

<shortened url>
For many, MS drugs not helpful, study shows
By Rob Waters
Bloomberg News / March 29, 2010

http://pagingdrgupta.blogs.cnn.com/2010/03/
March 29, 2010
Scientists find there may be two forms of multiple sclerosis

I couldn't believe the comments that MS patients were so excited about CCSVI because it was "simple" to understand???? We are not simpletons. Everyone I have talked to has spoken of the logic, the sense this makes.

I had submitted a question to the MS Society of Canada when I first registered, and had my hand up to ask this as well when it wasn't addressed: Since CCSVI is a vascular condition, shouldn't the speaker panel have included a vascular specialist who has read up on the research and studies done by Dr. Zamboni and others???

I really wanted to ask Dr. Murray: In an interview with CBC, I believe it was, he said that CCSVI was known and talked about in MS circles for over a year-and-a-half, before it hit the news. In fact, Joan Beal first wrote to Dr. Murray in December of 2008, telling him about CCSVI and expressing her hope that some of the Canadian research money might be allocated to venous insufficiency...so why did it have to take patient pressure following the W5 and the Globe and Mail stories to get the MS Society of Canada finally moving on this? Who exactly was in the MS circles he refers to that were talking about CCSVI during all that time and were then surprised when it hit the news?

<shortened url>

link to the Jock Murray interview. <shortened url>

Mr. Savoie said that the role of the MS Society is to provide timely, accurate info so patients can make the right decision, not to make the decision for us. Thanks to W5's timely and accurate info MS patients were finally able to hear about CCSVI. Since then, many of us have read the research, studies, as well as overwhelmingly positive feedback from already liberated patients and we have decided we want CCSVI testing and treatment in Canada, but we cannot even get proper testing never mind treatment because (as we now have seen) on the Canadian Magnetic Imaging site, "The MS Society of Canada has advised that 'For safety reasons, the MS Society does not recommend that people with MS be examined or treated for CCSVI outside of an established research protocol'. Until such a time as this changes, CMI will not be offering the imaging techniques used by Dr. Zamboni as we support and respect what leaders in the field are advising.”

After the web-cast, in conversation with a few other MSers, an MS Society of Canada staff person who has also been closely monitoring the CCSVI developments especially because of a family member who has MS, made a point of telling us that 2 people have died from the Liberation Procedure…then went on to say, the deaths involved a man with the stents and a lady on a plane. After gasping in shock and horror that more untruths were being spread about CCSVI, and here by one of our advocates, we strongly corrected the person and stressed that no one has died from the liberation procedure in fact so many are enjoying better health and quality of life after having been liberated in various parts of the world… The person still looked stunned and in disbelief that no one had died.

A couple of MS Staff asked how I felt about the event. I gave my above point about a vascular specialist. They both said, but Dr. Murray has written on MS! I said he gave incorrect information about CCSVI repeatedly. They said he’s an expert on MS! No neurologist is an “expert” on MS, unless he himself has MS, and then he is only an expert on his MS, because we all know that MS affects everyone differently. I am an expert on my MS.

The government people have said they are waiting for the medical profession and the MS Society to give the okay, but everyone, especially the MS Society of Canada (look at yesterday’s panel on CCSVI for confirmation), seems to only be listening to neurologists. For yesterday’s web-cast on CCSVI to only include a neurologist and not a vascular specialist was insulting to patients’ intelligence (oh, I forgot, they think we are all simpletons and we wouldn’t realize this was a ridiculous and total waste of time geared to offering incorrect and biased information) and of course plugging the upcoming MS Walks. With what little energy we have, we dragged ourselves to the web-cast (I, still with hope that our advocates would come through for us) which was just a ruse.

Do I have confidence in the monitoring of CCSVI developments in Canada, the “competition” for research grants, the panel members chosen, the selection of the studies for grants, etc.? Not after yesterday’s web-cast.

I only wish the “polite Canadian” in me had not joined in the applause at the end, because sadly, there was nothing about the web-cast to applaud.

I hope the MS Society of Canada will give me/us valid reasons to believe in them again.
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Postby Hockeydad » Thu Apr 08, 2010 6:19 am

You are an inspiration to alot of us. I'm only recently diagnosed but have been following your posts with great interest. Why don't you contact Avro F at W5, maybe you can get an interview? If not ; The Star or some other major media. They are all trying to get in on this hot topic bandwagon. You are obviously well versed in the research and would be a great advocate.
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Postby Chrystal » Thu Apr 08, 2010 6:44 am

Hockeydad, I don't deserve your very kind words but thank you for them. I definitely would not be a good candidate for interviews. I'm afraid my speaking days are pretty much over, thanks to MS and the havoc it has played in my cognitive abilities. Even yesterday, I had to take my question with me all typed out for me to read, to ensure that there was no disconnect between thought and speech, that the words came out in the right order....

My only hope in writing this recent post is that the MS Society of Canada will remember who they are advocating for and in that light, live up to a mission, commitment and agenda in a spirit of real honesty. I want to believe in them again.

Take care and keep positive and hopeful, Hockeydad.

God Bless,
Chrystal
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Postby Hockeydad » Thu Apr 08, 2010 7:09 am

You can't give up Chrystal. Try a letter to the editor. I can't articulate all that you know. I wish I could as my functions (aside from some tingliness in my feet and that l'hermittes thing (wow is that annoying)) are fine.
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Postby Chrystal » Thu Apr 08, 2010 8:39 am

Hockeydad, I did write in protest to the National Post editor, Mr. Blackwell and Mr. Corcoran, in response to the disgusting and again, inaccurate pieces (cannot even call them articles) they had written. Sent Mr. Blackwell the truths that any "google" search would have helped him and Mr. Corcoran find had they been interested in writing truth.

You do articulate as well as any one of us and the main thing is that you have your personal experience/story to share which counts for everything.
Patients' voices do need to be heard.

Take care. Signing off now.
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Postby Chrystal » Thu Apr 08, 2010 9:40 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 (all the more reason a vascular specialist who knows accurate information should have been on the panel.

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.

Take care and keep well.
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Postby Chrystal » Thu Apr 08, 2010 3:17 pm

Cannot believe I'm replying to my own posts - last one about this, promise. Time to move on and forward after this. After reading a comment by a poster on another site who thought the web-cast answered questions appropriately, 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 that part of 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..

The MS Society needs 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.

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

I think no more posting would be a good idea for me for a while!!!!

Here is information I just received from a fellow MSer with links to some 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.

Take care and keep hopeful and positive.

God Bless,
Chrystal
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In response to your comments regarding CMI's position...

Postby KPawlak » Mon Apr 12, 2010 9:44 am

As CMI's Medical Education Director and someone who has been intimately following as much of the CCSVI publications/news as possible, I wanted to comment on the recent feedback regarding our position as it relates to why we are not currently offering CCSVI MRI testing/imaging at our clinic.

As Sandra very kindly suggested, CMI is a private clinic, one which is not held to or influenced by any organization, other than the technical and operating standards to which we must adhere to as set out by the College of Physicians and Surgeons. In the case of whether or not to offer CCSVI testing, this is a decision made solely by ourselves and which we feel is prudent at this stage of the research.

We have provided an update to our initial blog, as referred to in the above posts, which we hope clearly outlines our position as it stands today. http://www.canmagnetic.com/blog/.

Kind regards,

Kim
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Postby annad » Mon Apr 12, 2010 12:00 pm

KPawlak,
I agree to disagree with your explanation to why you won't screen us. I do agree with you in the fact that this is cold comfort to us who are suffering. Ice cold. You state:

we believe it would be unethical and improper for us (outside of clinical trial) to offer and accept money for a service in which there is no definitive protocol, no controlled studies to demonstrate its efficacy and where the treatment risks are unknown and potentially fatal.

As far as I know, Dr. Haake has an MRV protocol put out and there is one also for the doppler ultrasound.
Every surgery has its' risks. There has not been a death directly related to CCSVI but there has been with stem cell treatment.

It comes right back to the fact that people get their vein issues treated but when you attach the MS stigma to it, all of a sudden we need a study! Do we need a study to fix other ailments we might have just because we have MS?

We do not need studies to prove that improper blood flow has consequences.

What we need is to stop treating this like a drug trial and to fix the system that keeps millions of people suffering everyday.
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Postby PCakes » Mon Apr 12, 2010 12:17 pm

hear! hear!

Well said! thank you Annad!

The expertise of patients is eclipsing the experts. The nature of this disease along with relative easy access to information, inspires and enables. I am an expert in my field and have complete respect for a knowledgeable client.. should we expect any less?
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