Time 2 Question MSSC

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

Time 2 Question MSSC

Postby Chrystal » Fri Aug 13, 2010 2:39 pm

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.

Thank you
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. ________.
Chrystal


~~~~~~~~~~~~~~~~~~~~~~~~~

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.

Thank you

MSSC Chair

~~~~~~~~~~~~~~~~~~~~~~~~~

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.

Sincerely,
Chrystal Gomes

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.)

~~~~~~~~~~~~~~~~~~~~~~~~~


Webcast Editing
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

MSSC Chair

~~~~~~~~~~~~~~~~~~~~~~~~~


Tue, August 10, 2010 3:53:48 PM
Webcast Editing
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


Hello Ms.__________,

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.

Sincerely,
Chrystal
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Postby garyak » Fri Aug 13, 2010 3:10 pm

Wow - a job superbly done Chrystal. I agree with all you said and how professional your correspondence was.
In Alberta they are holding an MS conference in Calgary called connections 2010. It's the second annual. I attended the one in Edmonton last year. Some topics this year are the same as last year like the sexual challenges MS patients and their partners have. There is also a lecture on Chinese medicine but nothing on the agenda about CCSVI which I find would be a "HOT" topic to include this year.
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Postby welshman » Fri Aug 13, 2010 5:07 pm

Thank you Chrystal for really putting the MSSC on the spot !!!
As you say why does the Society seem to ignore all the evidence, surely for the money these people are being paid, they could at least keep informed on what's happening. With all the funding the Society is receiving, they must be able to afford computer programming that will pull up anything swritten wiuth the phrases "MS" or : CCSVI".

In any event, great investigating and pressure to get answers and thing put right.

If you're interested, on "Forum for Health" (Google it - you'll need to "join") there are some phenominal letters to Yves Savoie and to the Canadian Federal Minister of Health Leona Agluqark (I know I haven't spelled that right) from the sister of two men who are travelling to Mexico for treatment. Just like yours, these letters are packed full of factual information and questions.
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Postby Chrystal » Fri Aug 13, 2010 5:28 pm

Thank you Garyak and Welshman.

One of major reasons I found the deletion of my correction so offensive was - just a couple of weeks prior to the April 7th CCSVI Info Session, I had attended the 1st Canadian Patient Summit in Toronto. The MSSC was involved in this Summit, as were other charitable organizations. A key staff member of the MSSC was actually on the Steering Committee and also moderated one of the sessions.

Imagine - a key purpose of this Summit was to ensure that the patient voice is heard...and then just a couple of weeks later...a patient voice (correcting an incorrect statement, of all things) was deleted from the MSSC's online webcast.

Note to Patient Summit organizers...pick your co-organizers more carefully in future years!

Garyak, it is terrible that CCSVI is not on the Agenda for the MS conference - mind you, maybe it's a mixed blessing because one would have to do a lot of their own checking to verify anything they heard from the MSSC about CCSVI. I would only trust information from qualified, knowledgeable specialists who have studies and know about this vascular condition.

Welshman, the Chair's team searched but was unable to find any references to the accurate information - imagine. Thank you for letting me know about Forum on Health - hadn't heard of this.

Please, make your voices heard on the MSSC Facebook site. We cannot allow what is happening to continue.

http://www.facebook.com/MSSocietyCanada

Take care and keep well, Gentlemen.
Chrystal
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Postby Johnson » Fri Aug 13, 2010 5:31 pm

Chrystal,

That was brilliant. I greatly admire your tenacity, comportment, and intellect, in pursuing resolution of such gross ineptitude, or willing misfeasance. As was said of a certain federal political party, 'the fish rots from the head down'. There is a strong stench of rotting fish at the MSSC.

I thank you for your most effectual efforts on our behalf.
My name is not really Johnson. MSed up since 1993
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Postby L » Fri Aug 13, 2010 6:19 pm

Yes, very impressive!
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Postby PCakes » Fri Aug 13, 2010 9:27 pm

Chrystal..amazing.. appreciation is mine.. you fought for your statement and you have won!!! Congratulations!!
What excited me was witnessing the awakening of the MSSC to the intelligence and awareness of the community they serve. Bravo!
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Dr. Murray

Postby 1eye » Fri Aug 13, 2010 10:19 pm

This the same Dr. Murray who said to a parliamentary subcommittee that if everyone was Liberated no one would go in a trial? Which statement gave me a lot more faith in the procedure than I think he intended? Let's face it, there are some who should be put out to pasture for their own good. Must be very comfortable resting on those laurels. But because of the death rate of CCSVI, many of those responsible are actually getting away with murder. They feel comfortable because of their numbers and money, but this is simple genocide, being drawn out to make it more palatable to the public, while much less so to its victims. It is happening on a global scale. I guess the gene pool will be cleaner when they're done. Fewer congenital malformations.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Chrystal » Sat Aug 14, 2010 9:30 am

Johnson, L, PCakes, 1eye and others,

We are all fighting for the same thing - the right to make our own informed decision concerning CCSVI, based on accurate and complete information, and the right to access appropriate vascular health care in Canada, just as people without MS are able to.

And now, many of us are also fighting for accuracy of concise information, accountability, and transparency from the charitable organization that exists in the name of our illness (MS) and has also chosen to be in charge of our vascular condition (CCSVI) (???)

I asked the Chair to conduct a serious investigation as to what is really going on at the MSSC..., and I hope she will do so and make this transparent for all MSers to see.

In the corporate world, where dollars are at stake, this would not be tolerated, would it? Why should it be tolerated here, in a charitable organization where the health and the lives of patients this organization is supposed to represent are at stake?

I thank you and all the others on here for your great efforts in our fight. I have very much appreciated the wealth of information and tips shared here and on other Facebook sites.

I hope you all have a wonderful weekend!

Take care and keep well,
Chrystal
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More MSSC Misleading of the public...

Postby Chrystal » Sun Aug 15, 2010 1:07 pm

As posted by an MSer on http://www.facebook.com/MSSocietyCanada

http://www.southwesternontario.ctv.ca/news.php?id=7949

MS Society spokes person says ".. love it if the province (Ontario) would fund liberation treatment, research and other MS research.."

Can MS Patients get some CLARIFICATION on what you are telling the public and what the reality is for MS patients.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The above is just more deliberate misleading of the public to show the MSSC is on board with CCSVI, in an attempt to keep fundraising dollars flowing in.

Let's not forget about the letter the MSSC/their Board sent to MPPs...we have seen the letter sent to Mr. Stephen Clark.


The MSSC claimed these letters were sent in response to queries from the MPPs. When asked to produce the MPPs' letters of inquiry to the MSSC, no letter was produced...because there were no letters of inquiry, obviously. The MSSC sent unsolicited letters putting MPPs on notice that the MSSC would inform them when it is time for public reimbursement of the liberation treatment.

~~~~~~~~~~~~~~~~~~~~~~~~

Here is that letter again. The MSSC writes below, "If and when the evidence required for public reimbursement is established, the MS Society will ask provincial governments to insure the procedure and to make it readily available."

The MSSC has been asked if they have since written and asked the provincial governments to fund this treatment...or is their spokesperson's "hopes" for such just empty words used to mislead the public on the MSSC's real and true stance? If they have sent such a letter, we will not believe this unless they post it on their Facebook site.


http://www.facebook.com/ccsvi.ms.toronto.canada
From:Natasha Mistry [mailto:Natasha.Mistry@mssociety.ca]
Sent: June 30, 2010 4:46 PM
To: Clark, Steve
RE: MS Society's Positionon CCSVI
June 30, 2010
Mr. Steve Clark, MPP
Suite101 100 Strowger Boulevard
Brockville,Ontario
K6V 5J9

Dear Mr. Clark:

In recent months, your office may have received inquiries from constituents regarding chronic cerebrospinal venous insufficiency (CCSVI). I am writing to provide you with details of the position of the MS Society of Canada with respect to CCSVI as it relates to multiple sclerosis.

I am sure I need not tell you of the importance of robust medical evidence being available before new treatments are reimbursed by our public health system to improve the health of Canadians. In May the Ministry of Health and Long-Term Care solicited the advice of the Ontario Health Technology Advisory Committee (OHTAC), which recommended that:

The initial reports on intravascular interventions to remove blockages in cranial veins in MS patients are encouraging. There are however, several key areas for investigation. These include clarifying the relationship between CCSVI and MS, particularly as some of these vascular anomalies have been reported in healthy control subjects. There are also uncertainties about the appropriate imaging investigations to diagnose CCSVI, the vascular and anatomic properties that define CCSVI, the indications for angioplasty and/or stenting and the safety, effectiveness and durability of these procedures.

·OHTAC has undertaken a preliminaryevidence examination of the safety and effectiveness of endovascular treatments for chronic cerebrospinal venous insufficiency in patients with multiple sclerosis and is unable to make any recommendation at this time due to the paucity of available evidence.

·OHTAC regards this treatment asexperimental at this time.

·OHTAC will continue to closely monitor new evidence and will provide its recommendation when more published peer reviewed evidence is available. In the interim, OHTAC recommends that patients with MS desiring these investigations be encouraged to participate in clinical trials.

It is important to note that while some of the research that has been done-to-date on CCSVI as it relates to MS appears to be promising, research continues to evolve including the publication of results that conflict with those of the original study.

As it is the province’s role to makedecisions regarding which medical services will be insured through OHIP, the MS Society has approached the Ministry of Health and Long-Term Care to better understand the level of evidence required to publicly insure treatment of CCSVI in people with multiple sclerosis.

For over 60 years, the MS Society of Canada has provided help and hope for people with MS across Canada. One of our seminal values ensures that we protect the right of people with MS to make their own decisions about living with MS. It flows from this that we honour and respect the choice of those who seek experimental treatment before robust evidence is available to warrant public reimbursement of those treatments.

The decision to seek treatment of any kind is a personal one. The role of the MS Society is to provide the best information and evidence available to assist the people that we serve in making decisions about their lives, their health and well-being, and their personal choices to pursue or not pursue various treatment options.

The need to accelerate the collection of robust and confirmatory evidence is of highest priority for the MS Society of Canada and other MS societies around the world. To this end, the MS Society of Canada has worked closely with the National Multiple Sclerosis Society of the United States and recently announced over $2.4 million jointly to examine the potential relationship between CCSVI and MS. In addition, the MS Society is working with the Canadian Institutes for Health Research (CIHR) to explore potential new research avenues into this area.

The CIHR has invited investigators whowish to conduct clinical trials on treatment of CCSVI in individuals with MS to submit funding proposals. All of the MS Society’s research competitions now being administered are open to requests from researchers interested in CCSVI. Information about the full range of our research programs is available athttp://mssociety.ca/en/research/researchfunding.htm

If and when the evidence required for public reimbursement is established, the MS Society will ask provincial governments to insure the procedure and to make it readily available. This approach is in keeping with the MS Society’s position on access to drug therapies and other treatments, which requires that these treatments be found to be safe and efficacious as determined by relevant regulatory bodies.

I have enclosed a backgrounder on CCSVIthat you may find of interest. We will keep your office informed of new information on CCSVI as it relates to MS. Should you have any questions, please contact Kim Steele, manager, Ontario government relations and communications at 416.922.6600 416.922.6600 416.922.6600 416.922.6600 ext. 3170 or by email at kim.steele@mssociety.ca .

Warmest regards,
John Clifford Chair, Ontario Division Board of Directors
cc:Deanna Groetzinger, VP, government relations and policy
Encl: Backgrounder onCCSVI
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MSSC BC/Yukon Division and CCSVI

Postby Chrystal » Sun Aug 15, 2010 7:16 pm

A fellow MSer added the posting below on MSSC's Facebook site. I've bolded one of the lines that stood out for me, as we have been asking that CCSVI be addressed as a stand-alone condition and treated as such while research and studies continue alongside to determine connection to MS, etc.

More questions asked of the MSSC now:

Are the MSSC Divisions working separately on the CCSVI issue or are all united in one stance?

If the Divisions are working separately, what are their individual stances on CCSVI?

If united, what is the current official stance of the MSSC on CCSVI?

What exactly is going on with the MSSC and CCSVI? (seems to be my constant question ever since CCSVI was brought to light by CTV's W5.)

~~~~~~~~~~~~~~~~~~~~~~~


http://www.facebook.com/MSSocietyCanada

"I also provide the link to the MS Society, lower mainland chapter FB page where they seem to be confirming this position of the MSS by directing readers to a summary of the comments reportedly made by the head of the MSSC BC/Yukon division (below) suggesting the separation of CCSVI and MS.

http://www.facebook.com/?ref=logo#!/pag ... 5020843991

By:Braden Corby

I went to a luncheon BBQ put on by the Victoria MS Society and Janet Palm, the head of MS Canada BC & Yukon Division Chapter was there.

She had just come from the long awaited Aug 11 meeting with representatives from the BC Health Ministry, College of Physicians, Reformed MS Society, and more.

A very nice lady, she chatted with us for quite a while – here are some comments I remember:

- Janet approached the ministry asking them to consider making MS and CCSVI separate issues. The ministry was receptive to this idea and will explore further.

- Janet was impressed by the compassion demonstrated by the BC Health ministry representative. The representative talked about reading many moving letters that brought tears to her eyes.(The point being people that maybe the BC ministry does have a bit of a heart and YES they are listening)

- Janet reported that a top vascular surgeon at the meeting said that this is still a new and very tricky procedure – it’s not as simple as it’s often portrayed – and he would want 2~3 months practice before he felt totally comfortable doing this.

(My personal note – I’ve been seeing this coming up a lot lately – not all doctors are created equal and both the diagnosis and treatment take skill and specialized CCSVI training and equipment. Think about that the next time you hear of the latest clinic wanting to offer treatment

– do your due diligence and make sure the doctor knows what s/he is doing. Janet said this was also discussed at the meeting).

- Janet asked what specific information & criteria needed to be met to allow the BC Health ministry to move ahead with treatment trials and treatment covered by BC Med. She did not say how this was answered.

- Janet doubted there would be any forthcoming announcement from BC Health Ministry concerning CCSVI as a result of this meeting.

- Janet mentioned the upcoming meeting August 26 with Federal Health Minister and various CCSVI “experts”. Her impression was that many of the provinces were waiting to see the outcome of that meeting.

- Janet asked the BC Health Ministry to allocate more money to do clinical trials. That’s about all I remember for now. I think the main impression I got was that we are being listened to – both by the BC health Ministry and the MS Society. Unfortunately, the research still has to be done – no one is willing to move until this happens.

Oh – Janet mentioned that the UBC study has not actually started yet – they have only just recently received approval from the ethics committee. So hopefully UBC will be starting that soon.

The wheels of industry move very slowly people.But Janet did give me some hope.And I thank her for that.

Braden Corby
http://www.facebook.com/l/8a325;www.forumonhealth.com
"
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Chrystal
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MSSC Quebec Division & CCSVI

Postby Chrystal » Sun Aug 15, 2010 7:56 pm

The same fellow MSer who posted the information above regarding the MSSC's BC/Yukon Division & CCSVI, also posted the following regarding the MSSC's Quebec Division & CCSVI, on the MSSC's Facebook site:

http://www.facebook.com/MSSocietyCanada

"To also echo Chrystal, I understand that the MSS Quebec division is asking for reports from patients who underwent CCSVI treatment elsewhere and have been denied follow up care back here in Canada.

Could you tell us why the Quebec division of the MSS is seeking this information? Does the MSS take issue with the denial of healthcare by our healthcare system to MSer's for their vascular issues?"
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Postby Chrystal » Mon Aug 16, 2010 9:48 am

There have been some confusing, contradictory statements from the various MS Society of Canada Divisions regarding the MSSC's position on CCSVI.

If you want the MSSC to respond to the many questions we have been asking regarding:

- CCSVI
- their current offical stance on CCSVI
- the mixed messages from various Divisions, staff/spokespeople
- their incomplete/inaccurate information
- their deletion of accurate information and retention of inaccurate information
- their continuing recommendations/advice regarding CCSVI, despite their obvious inability to keep up with accurate and timely CCSVI information
- etc., etc., etc...

then please join us on the MSSC Facebook site and comment/question/like/dislike as you feel appropriate.

If you want to see accountability and transparency, please let the MSSC know.

Whether you agree or disagree with anything posted on their site by the MSSC OR by any of us fellow MSers, please let your voice be heard.


Thank you. Take care and keep well.


Here is a link to their site: http://www.facebook.com/MSSocietyCanada

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Below is the latest example of mixed messages emanating from the MSSC:

CTV - Bike ride to raise money and awareness for MS.
CTV Southwestern Ontario - News
www.southwesternontario.ctv.ca
Trademark & Copyright Notice: and ® CTV and its related entities. All rights reserved


As posted by an MSer on http://www.facebook.com/MSSocietyCanada

http://www.southwesternontario.ctv.ca/news.php?id=7949

MS Society spokes person says ".. love it if the province (Ontario) would fund liberation treatment, research and other MS research.."

Can MS Patients get some CLARIFICATION on what you are telling the public and what the reality is for MS patients.
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MSSC Responds To Only One of MANY Outstanding Queries

Postby Chrystal » Mon Aug 16, 2010 5:08 pm

The MSS of Canada responds to the question about their spokesperson's words on the CTV interview mentioned just above this post re Bike Rally.

The MANY other questions waiting for an answer remain unanswered.

We should have known that the MSSC didn't have a change of heart where CCSVI is concerned...as someone else pointed out before, a heart would be required in order for this to happen.

The MSSC and the NMSS are the only ones hopeful about the research they have funded...for studies that were selected by the International Review Committee that was selected by the MSSC and the NMSS!!!

Many of us are not waiting around for the results of these studies. The MSSC should know that we are still advocating and will continue advocating for CCSVI testing and treatment to be made available here for our fellow MSers who cannot travel out of the country. Something that the MSSC, our advocates should have been doing for the people in whose name and in whose illness it exists.

We are also advocating for accountability and transparency. We will not stop for as long as the MSSC stays involved in MSers' access to appropriate health care.

http://www.facebook.com/MSSocietyCanada


~~~~~~~~~~~~~~~~~~~~~~~~~

http://www.facebook.com/MSSocietyCanada

Multiple Sclerosis Society of Canada

Greetings all,

The quote from our spokesperson at the Acton to Waterloo MS Bike Tour was: "We would love it if the government would fund the liberation treatment research and other MS research but we are also encouraged by and excited about ...the research that the MS Society here in Canada, as well as the US and other organizations around the world are doing for the liberation treatment."

The MS Society of Canada has requested that the federal government fund research into CCSVI and MS through the Canadian Institutes for Health Research (CIHR), and we believe that all provinces can play an important role in funding MS research. We are hopeful the MS Society’s own research funding towards CCSVI will help build the necessary scientific evidence to move the theory forward and welcome all additional resources that can be dedicated to advance the speed of CCSVI research.

Regards,
-Rob
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Postby Chrystal » Tue Aug 17, 2010 1:41 pm

WOW, the MSSC is sure good at ignoring MSers' questions. Will keep posting the same questions over and over again until there is a response.

Why?

Accountability.

And to keep our unanswered questions and our voice on their public forum and as many other forums...for the donating public to realize there is something questionable going on at the MSSC where CCSVI is concerned.

http://www.facebook.com/MSSocietyCanada
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