I am sharing correspondence between the MSSC Chair and myself over the deletion of my correction of Dr. Murray's incorrect answer to an MSer's question at the April 7th, 2010 CCSVI Information Session.
I noticed the deletion when they posted the webcast on their website and a fellow MSer wrote them in protest on April 20. She received a response stating the editing had been done to ensure ease of viewing, with only the Moderator re-stating questions from the floor.
I wrote to the person the next day (April 21), letting her know that I would have believed this explanation had it been done consistently throughout the webcast, but it hadn't. In fact, barely audible questions/comments were still included along with the Moderator re-stating the questions/comments. I also said that the MSSC should have been more interested in ensuring accuracy of information being disseminated to MSers, government, media, etc., rather than ensuring "ease of viewing". I never heard back from this person.
I raised the issue again at the MSSC AGM on June 12. The MSSC Chair promised to follow up on this – and thankfully, she did. I sincerely hope that she will follow up on my recent response of August 10th below which asked her to address some more important questions around this issue of the MSSC key staff being “unaware” of complete and accurate information.
MSers, we should all be demanding answers to these questions, especially since the MSSC’s recommendations and advice against CCSVI testing and treatment in Canada are likely based on the information they have on CCSVI – information which seems to be consistently incomplete and inaccurate. Why is this happening and why is this being allowed to continue?
If you haven't already done so - please join the rest of us - it's time we and the donating public question what is really going on at the MSSC. http://www.facebook.com/MSSocietyCanada
Our health, our access to appropriate healthcare for a vascular condition here in Canada is being held hostage by the MSSC's rommendations and advice. The government, media, medical community all keep referring to them and their stance. Even Dalton McGuinty, after stating that Ontario will not follow Saskatchewan's lead, recently said that "even the Multiple Sclerosis Society of Canada" hasn't endorsed CCSVI treatment.
MSers are not desperate and simple, which has been portrayed over and over in the media. We were not looking to be duped by either side...pro-CCSVI or anti-CCSVI. We were and are seeking accurate and complete information so we can make the best decisions for our health. Thank goodness we have been receiving such from each other and from other more reliable parties.
From: MSSC Chair
To: Chrystal Gomes
Sent: Mon, July 12, 2010 10:19:13 AM
Subject: MS Society AGM
Hello Chrystal, I want to thank you for attending the annual general meeting. I promised to look into your concerns regarding the webcast video and I have. I apologize for the delay in responding but I have been away on holidays. I have spoken with the marketing and communications team and they have told me that all the editing was conducted in the spirit of making it accessible and easy-to-watch. I have clarified that any reference to the video will now include a reference to the transcript which captures your words unedited.
Chair, MS Society of Canada
----- Original Message -----
From: Chrystal Gomes
To: MSSC Chair
Sent: Monday, July 12, 2010 9:52 PM
Subject: Re: MS Society AGM
Dear Ms. _____,
Thank you for your message. I hope you enjoyed your holidays.
While I appreciate you taking the time to speak with the Marketing and Communications Team, I find their explanation - which I have read before - as questionable as the editing itself. As I pointed out at the AGM, an MSSC staff member had given a similar response to a fellow MSer who questioned the editing.
The MSSC staff member was _______ - Senior Coordinator, Communications, Marketing and Development who e-mailed the following to a fellow MSer on April 20th: “The editing of the videos was done in a way to ensure ease of viewing. Questions from the floor were re-stated by the moderator for the specific purpose of making the videos easier to watch once they were posted to YouTube. A full unedited transcript of the session is available for reading on our website http://www.mssociety.ca/en/pdf/CCSVI/Tr ... 040710.pdf
Upon reading this explanation, I wrote to Ms. ________ on April 21, never to even receive an acknowledgement of my message.
As I wrote to Ms. ____, I found this explanation questionable because the editing was not done consistently throughout the webcast, with all audience questions and comments being deleted and only the moderator's voice re-stating audience questions and comments kept in. In fact, barely audible audience questions/comments were still included, along with the moderator’s voice re-stating the questions/comments. This was noticed by myself and others.
I was particularly upset about the editing, because the MSSC should have been more concerned about correct information being disseminated to MSers who were relying on them for such, rather than editing out a correction in an effort to make the online webcast “easy-to-watch”?
Interestingly, the CEO Yves Savoie even made a point of stating at the AGM that, “…the society’s role in this context is to provide guidance information based on timely, accurate, hopefully relevant information, but to ensure that our role is as a provider of the information and that we have as a value to honor the right of people with MS to make their own decisions, so I want to make sure that that’s clearly understood.” And yet he sat quietly while Dr. Jock Murray gave inaccurate information about the equipment used in the Buffalo study that produced less impressive results than Dr. Zamboni’s results.
The ironic thing is...Wendy, the MSer who questioned Dr. Murray about his frequent references to the differing results between Buffalo and Zamboni studies...has not been edited out. Her pointed question about the equipment used is there, loud and clear before the moderator re-states the question. And yet, my correct answer to her question is edited out while Dr. Murray's incorrect response remains...I'm sorry, this just boggles the mind.
Since the editing seemed so selective, I can't help but wonder - were the Marketing and Communications Team directed or instructed by any MSSC staff member on what in particular to edit?
Ms._________, I had really hoped you would address the bigger question that I brought up at the AGM. Why didn’t any of the key MSSC staff members present at the AGM speak up and correct Dr. Murray’s inaccurate information – in the interest of living up to the role the CEO stated they have? Among the key staff members present, there was – _____, _____, _____, ____, ____ …along with many other MSSC staff members.
There was a time when I had full faith in the MSSC. I never imagined that the day would come when I would have so many questions and doubts where this organization is concerned.
Thank you for taking the time to write to me, Ms. ________.
From: MSSC Chair
To: Chrystal Gomes
Sent: Sun, July 18, 2010 9:32:13 PM
Subject: Re: MS Society AGM
Hi Chrystal, thank you for your feedback. I want to reiterate that the editing was conducted with nothing but the best of intentions. That being said, we understand the importance of articulating accurate information. We are willing to take on the cost and the effort of updating the video if it is found to be inaccurate but we need your help.
You stated at the forum " in his ( Dr. Zivadinov ) previous study he did not have the proper equipment and he did not follow the full protocol procedures that Dr. Zamboni had for his study, and that could explain the difference in the results. And he said for his next trials he would have the proper equipment and follow the proper protocol. "
Can you please send a specific reference from published literature (poster presentation at a conference or article from a peer-reviewed journal) to indicate that this is the case. Our team has gone through the published literature and cannot find any reference from Dr. Zivadinov that suggests he did not have the proper equipment or that he did not follow protocols established by Dr. Zamboni.
Once you send the reference I will recommend the video be revised.
From: Chrystal Gomes
To: MSSC Chair
Cc: CEO and 5 of the Key MSSC Staff present at April 7 CCSVI Info
Sent: Fri, July 23, 2010 3:20:21 PM
Subject: Webcast Editing
Dear Ms. ___________,
Thank you for your message.
I would like to begin by saying that I appreciate the years of service that the MSSC has provided to an exceptional number of MS clients and their families. I am sure that everyone at the MSSC also appreciates the assistance that an exceptional number of us MSers, our families and friends have given them through our fundraising efforts, our advocacy on the MSSC’s behalf, and our volunteer service. It has been a mutually supportive relationship.
Thank you for following up regarding my concerns about the editing of the online webcast recording and the inaccuracy in some of the statements made at the CCSVI Information Session on April 7, 2010. I am pleased that you recognize the necessity in ensuring that all information emanating from the MS Society of Canada is accurate.
It is true. Dr. Zivadinov did acknowledge that his study did not have the proper equipment and that he did not follow the full protocol as Dr. Zamboni had used in his study, which would explain the differing results of the two studies.
Many MSers were aware of these facts, which is why we find it very alarming and most regrettable that Dr. Murray, speaking in authority and on behalf of the MSSC, was seemingly unaware. Just as disturbing is the assumption that the MSSC staff present at the Info Session were also unaware (since they didn’t correct Dr. Jock Murray), and obviously so are the members of your team who cannot find any references to these facts. Sadly, this is only one of more instances where MSSC staff/representatives were seemingly “not aware” of key CCSVI information. This is very disconcerting, considering the MSSC has been actively giving advice and making recommendations regarding CCSVI since it was first brought to light by CTV’s W5.
For your benefit and for the information of the MSSC, I append below all the relevant published information that confirms the facts about Dr. Zivadinov’s study.
I do not believe that the MSSC should incur costs to update the video at this point, since the damage has already been done. But it is important and essential, in the interest of disseminating accurate information (this also being an often declared objective of the MS Society of Canada ), that we utilize all avenues of communication to report the actual facts concerning Dr. Zivadinov’s study and the equipment used.
In order to reach as many MSers who would have been misled by the incorrect information when viewing the online webcast, I urge you to ensure that appropriate notification of both the erroneous statements made by Dr. Jock Murray and the correct information be immediately:
- sent in a mass e-mail to all:
o MSSC members
o MSSC staff
o MSSC Board of Directors
o MSSC Medical Advisors
- placed on the following internet sites:
o the MSSC website’s home page, online webcast page and Facebook page
o all of the MSSC Chapter and Division home pages and webcast pages
o all of the Chapters’ and Divisions’ corresponding Facebook page
o MSSC’s You Tube page
- added in the next publication of:
o MS Canada magaziine
o MS Ontario magazine
o all Chapter and Division newsletters.
This is the most effective way to correct the situation. This will also reflect the MSSC’s understanding of the importance in delivering accurate information, and its commitment to consistently realizing this objective in the interest of MS patients.
Ms. Lumsden, I trust that you and the MSSC will wish to correct this unfortunate error at the earliest convenience, in a continued effort to be the guiding force so many MSSC clients look to for accurate information.
I thank you for your interest in setting the record straight. Please confirm you will consider and follow through on my recommendations, and/or at least inform me of the actions the MSSC will take to fully and effectively rectify this most unfortunate situation.
Excerpts from the presentation at a forum of the American Association of Neurology on April 14, 2010, by Doctors Zamboni and Zivadinov. I have highlighted in bold the references that counter Dr. Jock Murray’s key misleading response at the April 7, 2010 CCSVI Information Session, which should therefore render all his subsequent references to the Buffalo study null and void.
http://www.ncahs.nsw.gov.au/support/ind ... siteid=189
(N.B. I also included many other article references with this same correct information, along with references from the CCSVI Information to comments made by the CEO and neurologist to the Buffalo results in an attempt to discredit Dr. Zamboni’s results both before and after my correction, as well as references to statements made by the CEO regarding the MSSC’s role in providing accurate information, etc.)
Sat, July 31, 2010 8:59:17 AM
From: MSSC Chair
To: Chrystal Gomes
Chrystal we have edited the webcast to include your comments: http://www.youtube.com/watch?v=ilDEt3vLWiE
We will continue to update our website with new information as it is published
Tue, August 10, 2010 3:53:48 PM
From: Chrystal Gomes
To: MSSC Chair
Cc: Five of the Key MSSC Staff present at the April 7th CCSVI Info Session, fellow MSers and a couple of MPPs
Thank you for following up regarding the deletion of my correction of Dr. Jock Murray’s inaccurate answer to an MSer’s question, on the online webcast of the April 7, 2010 CCSVI Information Session in Toronto. It has taken me some time to reply to your message because I was quite confounded by your inadequate response to the situation. I do appreciate your efforts in seeing to it that the correction is included as Part 5A, and knowing that at least you care about correcting this wrong to ensure accuracy of information.
However, I cannot comprehend your non-compliance to any of my requests which would have been the only appropriate and effective way to rectify a situation where thousands of people have already been mislead by the inaccurate answer Dr. Murray gave to the MS patient's question as they viewed the edited online webcast on the MSSC site, You Tube, and other sites that have added the video clips since early April.
This leads me to believe that the MSSC is not as concerned as it claims to be about fulfilling its self-proclaimed role of ensuring MS patients receive timely and accurate information - not to mention the government, media, medical community and donating public who are often referencing quotes from the MSSC.
Another major concern that you did not address, was the extremely disconcerting fact that obviously neither you, your team, nor any of the MSSC staff (from top to bottom) were even aware of the accurate information regarding the Buffalo study’s equipment used and protocol followed. Why is that? Why did no one at the Information Session know the accurate information and make a timely correction right then and there? Why, in the ensuing months when the MSSC was questioned by a fellow MSer and myself, did none of these people become aware of the accurate information and make a correction on their own at any point?
Why was I, a patient, required to submit references to accurate information that the MSSC staff should have known and had themselves? The MSSC staff are obliged by employment to have and disseminate accurate information to MS patients, government, media, the donating public. The fact that they have failed so miserably in this area far too many times already where CCSVI is concerned, is robust evidence that the MSSC staff are either grossly inept or they are deliberately misleading the public - most especially, the decision-makers who are turning to the MSSC as a reference point. There needs to be a serious investigation regarding this, and I hope that you - in good conscience - also realize this and follow up accordingly.
As I think back to the CCSVI Information Session, it seems that at every turn references were made to the less impressive Buffalo results in a bid to discredit Dr. Zamboni's more impressive results. This seemed to be the whole purpose of the CCSVI Information Session. The fact that both studies were not conducted on a level playing field, logically implies that one study's results cannot be fairly used to devalue the other study's results...and all the references made to that effect at the session by the CEO and Dr. Jock Murray are illogical.
Even to this day, I understand that there is incomplete information on a number of pages of the MSSC website regarding CCSVI, the Buffalo studies and Dr. Zamboni's studies. Please do not ask me again to provide references. The paid MSSC staff should be able to find them and make necessary corrections in their interest of providing timely and accurate information...although timely would not apply now.
Thank you, Ms. ________. I hope that you will follow up with a proper investigation as to what is really going on at the MSSC. As long as the MSSC is influencing decision-makers with their recommendations and advice against CCSVI testing and treatment, the health of us MS patients and our access to appropriate health care for our vascular condition are being held hostage by this organization that is equipped with inaccurate and incomplete information, and the wrong experts from the medical community. Our lives and our health is at stake - please take this as seriously as we do.