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.
For many, MS drugs not helpful, study shows
By Rob Waters
Bloomberg News / March 29, 2010
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?
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.