Time 2 Question MSSC

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

IMPORTANT!

Postby Chrystal » Thu Aug 19, 2010 8:30 pm

C.P. posted the following message on Facebook...

What's wrong with this picture?

Alberta's Health Minister Gene Zwozdesky has created a "working committee" to develop a comprehensive provincial MS stategy, including the lastest developments in MS research which will include the "liberation treatment".

He has indicated that he is appointing representatives from the MS society of Canada - Alberta Div; Alberta Health Services; other ministries including Seniors and community Living, Children and Youth Services and Housing and Urban affairs; as wll as other academic and clinical staff.

Why are there are no MS patient representatives or for that fact no one with any knowledge, facts or direct experience with CCSVI and the angioplasty treatment.

I have sent a suggestion to Mr. Zwozdesky that to have a fair representation on this committee, that maybe he should invite Ashton Embry and Ginger McQueen to participate in these discussions. This way we will not have the MS Society and Alberta Health services presenting scare tactics to an uniformed committee.

The outcome of these discussions will be the basis on which Alberta will either support CCSVI testing and treatment or they won't. Let's make sure we get a fair shake. Please write to Gene Zwozdesky and let him know your opinions on this committee.

The committee's first meeting is planned for late Sept 2010.

PLEASE write to Gene Zwozdesky asap at:

gene.zwozdesky@gov.ab.ca


Thank you.
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RESULTS OF CCSVI STUDY AVAILABLE

Postby C2010 » Thu Aug 19, 2010 9:59 pm

Results of CCSVI study available

An important study on CCSVI is underway and early results are available


There have probably been over 100 Canada MS Patients treated for CCSVI by now. Each will have reported back or will soon be reporting back to their attending neurologist.


Neurologists keep good records of symptom progression.


The study taking place is the compilation of those ongoing assessments.


The data is there and the database is growing.


With MS, it has been impossible to predict the future but the past is known and one of the big questions with CCSVI treatment is does it improve conditions over what was there in the past. Does it improve conditions over what is known to occur with a placebo effect?


Those questions can be answered tomorrow.


Put a call out to the relevant neurologists and their patients. Tally the data.


Is the Government doing this work? Is the MS Society? Is the association of Neurologists? Is anyone?


I would like to know what has been going on.
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Postby PCakes » Thu Aug 19, 2010 10:24 pm

hi C2010.. Are you quoting? sharing known info? asking a question? sorry..

Results of CCSVI study available
An important study on CCSVI is underway and early results are available
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Postby C2010 » Thu Aug 19, 2010 11:17 pm

Apologies, PCakes. Asking a question.

Why is the data concerning assessments of these treated cases not being compiled and presented as a "study"? The neurologists have a record of their patients "before", surely they can assess and report on their "after".
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Postby Chrystal » Mon Aug 23, 2010 5:14 pm

The MSSC Chair and MSSC staff continue to ignore the questions I asked as well as the issues I raised, regarding their inability/disinterest in acquiring and disseminating accurate and timely CCSVI information - both on their Facebook wall and in e-mails.
http://www.facebook.com/MSSocietyCanada ... ada?v=wall

The following is a posting on the MSSC Facebook site. Another example of refusal of the MSSC to answer to questions raised by MS patients and/or appropriately resolve questionable issues.

There is something seriously WRONG here, and we need to make sure that those in power HEAR OUR VOICES.


http://www.facebook.com/MSSocietyCanada ... ada?v=wall

After several attempts of trying to contact Mrs. Royal, this is the answer that I got. As a former School Principal, I`ve learned to discuss and debate in a very open-minded, respectful manner. I was also president of the local MS chapter (volunteer basis) two years ago - I`ve headed fundraising programmes, etc, etc, e...tc. Even at my lowest times I worked for you on a volunteer basis. I can not believe that you are threatened by my request to discuss the issues that I have raised. You have disappointed me.....I was willing to fly from Halifax to Toronto, at my family`s expense, or pay for the phone call at my expense. Honestly, what are you afraid of ?

Since there was no warning that this was a private communication, I respectfully inform the public of your stance on meeting with people who have MS and who worked for you fund-raising. This is totally unacceptable !!!!! Below is the content of the message received.


Mr. Alkenbrack:

Thank you for this information. We respectfully decline the invitation to meet with you.
...
We strive to maintain an atmosphere of free and open dialogue where constructive criticism and debate is welcomed. Our staff reserves the right to exercise discretion in ensuring that all interactions, face-to-face or otherwise, meet this standard.

Thank you,

Cristina Toporas | Manager, Evaluation and President's Office
_____________________________________________________________
MS Society of Canada | 175 Bloor Street East | Suite 700, North Tower | Toronto, ON M4W 3R8

Our Mission:
To be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.

~~~~~~~~~~~~~~~~~~~~~~~~~
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Postby L » Mon Aug 23, 2010 5:24 pm

Perhaps take this to the press?
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Postby Chrystal » Mon Aug 23, 2010 5:44 pm

You're so right, L.

Media, Government, Sponsors, Donating Public, Charity Intelligence...I am going to shout it from the rooftops even louder, and will e-mail anyone and everyone about this. I encourage anyone else - MSers and non-MSers whose eyes have been opened to this travesty.

This is an outrage, the fact that this so called "advocate" agency is not accountable to anyone, least of all to the very people in whose name and in whose illness they exist!! And yet we continue to be held hostage by them.
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Postby Chrystal » Mon Aug 23, 2010 5:55 pm

"We strive to maintain an atmosphere of free and open dialogue where constructive criticism and debate is welcomed. Our staff reserves the right to exercise discretion in ensuring that all interactions, face-to-face or otherwise, meet this standard. "

MSSC, where CCSVI is concerned, we see that you are striving to maintain an atmosphere free of accurate information, accountability and transparency...where MSer's questions and issues raised are ignored.

Your staff is avoiding face-to-face meetings, phone calls and e-mails that call you up on your questionable behaviour...and you are exercising your wish to hide from truths rather than man-up and properly and fully address this, in the interest of ill patients you should have been serving.

The MSSC spokesperson speaks of their staff's rights. What about the rights of us MS patients? Do we not have any at all?
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Response to MSSC's Answers to my questions

Postby Chrystal » Fri Aug 27, 2010 1:51 am

http://www.facebook.com/MSSocietyCanada

Response to MSSC's Answers to my Questions:

Q: My initial question

A: Answer from Rob the MSSC Administrator

C: My response to Rob's Answers


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

Rob, thank you for taking the time to review my questions, but I am afraid that in most cases they were still not answered. I know you are the “Messenger” and I hope you understand my frustration which only continues after reading the responses you gave.

Please let us know who is giving you these answers to convey to us? I am asking, because there is a seemingly deliberate avoidance of the actual questions and answers seem to have been randomly pulled out of a hat.

This seeming unwillingness of the MSSC to answer questions, flies in the face of the MSSC’s self-proclaimed mission of being accountable and transparent. It is not only disrespectful, but unconscionable. My responses are indicated as “C:” throughout.

Q: Hi Rob, I have repeatedly asked the questions below of the MSSC Chair (copying to the CEO and 5 key staff members) regarding the MSSC webcast editing, and have also addressed them here. BTW, were you also present at the April 7 CCSVI Information Session?

A: Yes – I was present at the CCSVI Information Session. My role was to collect and organize questions that were submitted by way of social media.

C: Rob, thank you for letting me know your role at the CCSVI Information Session. May I ask you to please give the roles of the other key staff present at the Session, as well as their official titles if I have not indicated? I have left out their full surnames, but I think you will still be able to identify who they are.

Yves S. (CEO & President)
Aprile R.
Dr. Karen L.
Jon T.
Nicole M.
Helga S.
Stewart W.

There were other staff members present, but I either cannot recall or do not know their names. I understand it is the role of the MSSC (that would include all staff, most especially key staff - especially if the information falls within their work area) to provide timely and accurate information, as stated frequently by the MSSC. I would assume that this primary role would co-exist with any supplementary role given to an MSSC staff person at the CCSVI Information Session? That said, it would be their duty to correct and incorrect answer given in response to an MSer's question.

The MSSC has taken on the additional role of advising and recommending against CCSVI testing and treatment of MS patients. How is this role being adequately fulfilled if accurate and timely CCSVI information is not being acquired or disseminated by MSSC staff and experts to patients, government, media, in Information Sessions and even on this site?

Q: 1. Why did the MSSC choose not to comply with 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 the neurologist 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.

A: We have re-edited the CCSVI webcast to include your comments and uploaded the segment to our YouTube Channel. It can be found on our YouTube Channel - http://www.youtube.com/watch?v=ilDEt3vLWiE

C: Rob, you still did not answer why the MSSC chose not to comply with 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.

Q: Another major concern not addressed, was the extremely disconcerting fact that obviously neither you (the Chair), her 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?

A: There is continuing debate, and some confusion, as to which method is most reliable for the diagnosis of CCSVI. One goal of the studies the MS Society is funding is to examine the best method and technology to diagnose CCSVI.

C: Rob, again my questions are not answered. The answer given has nothing to do with my questions. My question was not about which method is most reliable for diagnosing CCSVI. The studies that the MSS is funding, will not answer my questions: Why did none of the MSSC Staff at the Information Session know the accurate information about the equipment used and protocols followed in the Buffalo study? Why did none of the MSSC Staff make a timely correction of their expert’s inaccurate answer to an MS patient?

Regarding the point you made.. with all due respect, the confusing debate about the most reliable method of diagnosing CCSVI, is only taking place among the MSSC and their neurologist medical advisors. Dr. Sandy McDonald and many others are successfully testing for and diagnosing CCSVI, rather than wasting time and patients’ health in debating.

‎Q: Why, since April 20th and April 21st (when the MSSC was questioned by a fellow MSer and myself) and the months that followed, did none of these people become aware of the accurate information and make a correction on their own at any point?

A: The research surrounding CCSVI is constantly evolving. We do our utmost to post the most up- to-date information on our website at mssociety.ca/ccsvi

C: Again, the question is not answered. Why, since April 20th and April 21st (when the MSSC was questioned by a fellow MSer and myself) and the months that followed (right up until the end of July), did none of these people (MSSC CEO, Staff, Chair) become aware of the accurate information and make a correction on their own at any point?

Q: Why was I, a patient, required to submit references to accurate information that the MSSC staff should have known and had themselves?

A: Thank you for submitting the information. We post the latest news and research on this topic as it becomes available at http://mssociety.ca/en/research/ccsviMS_resources.htm. We post from a variety of credible Canadian and international sources and from peer-reviewed medical literature.

C: You’re welcome, Rob. But yet again, my question is not answered. Why didn’t the CEO or any of the MSSC staff (from top to bottom) have and know the accurate information about the Buffalo equipment and protocols? Why couldn’t they even find references to the accurate information that was publicly available? The latest news is not being posted by the MSSC. Instead, MSers are posting the information on this site.

Q: There needs to be a serious investigation regarding the above.

IS THIS INVESTIGATION BEING DONE? WILL THIS BE DONE?

A: No investigation will be taking place.

C: Rob, are we to conclude that there really is no accountability at the MSSC?

There was an obvious and blatant failure on the part of the MSSC and their expert in having timely and accurate information (a self-proclaimed role of the MSSC that the CEO repeatedly mentioned at this Session)regarding the Buffalo study results.

There was a failure in the editing of a correction of an expert’s incorrect answer to a patient.

There was a subsequent failure in timely and appropriate follow-up when the editing was first questioned on April 20th.

There was a failure in the MSSC’s seeming inability/disinterest in learning the accurate information.

There was a failure in ensuring this situation was rectified in the most effective manner.

And finally, there was a failure in answering repeated questions to the Chair, MSSC key staff and on this site…up to and including the answers posted above in response to my questions.

Rob, please clarify. I understand that the MSSC is accountable to the Chair and the Board of Directors?

The MSSC Staff are eligible to vote at the AGM in the election of Members of the Board? In fact, before this year's AGM, a Board Member sent e-mails seeking proxy votes to "block" 2 pro-CCSVI members from getting seats on the Board.

Are the Chair and the Board of Directors accountable to anyone?

Q: 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. Was that the purpose of the CCSVI Information Session of April 7, 2010?

A: We hosted a CCSVI information forum for the general public and media to discuss this new avenue of research and answer questions on the topic.

C: The purpose of the CCSVI Information Session may not have been to discredit Dr. Zamboni’s findings. But the expert’s repeated referencing of the Buffalo results (both before and after my correction) in comparison to Dr. Zamboni’s results made me and many other MSers question the purpose.

Q: 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 the neurologist are illogical.

Has the MSSC publicly acknowledged this anywhere?

A: The aim of the CCSVI information was to discuss in an open format (online and in person) this new avenue of research and answer questions on the topic. Speakers were there to provide perspective on the topic of CCSVI.

C: I suppose it was too much for me to ask that the MSSC be accountable and publicly acknowledge that all references made by the CEO and the expert to the Buffalo results in comparison to Dr. Zamboni’s results were illogical, even though they were. The Speakers provided a very biased perspective on CCSVI. Even the patient only represented one segment of the MSer population. There was no vascular perspective presented.

Q: Can/Will the MSSC hold a REAL CCSVI Information Session any time soon - this time with a speaker panel that includes Vascular specialists and IRs who have studies CCSVI and can speak knowledgeably about this condition, and answer patients' questions?

A: A total of 1,451 participated in the CCSVI Information Session either online or in person. An evaluation of the session was sent to 1,414 email addresses, and 251 attendees evaluated the event. Overall, the session was deemed to be very effective in providing relevant information about CCSVI and answering participant questions about CCSVI and MS.

At this time, there are no plans to hold a second information session.

C: Rob, you do realize that most of the 1,451 participants who viewed the session online, between early April and the end of July, would have viewed the edited version and believed the inaccurate response by the expert to be true. There was never any indication on the MSSCs site that the online version had been edited and for entirety, one should read the transcript. Far more viewed the edited version on You Tube and other online sites, receiving the incorrect information.

Goodness, it is mind-boggling for the MSSC to believe that “Overall, the session was deemed to be very effective in providing relevant information about CCSVI and answering participant questions about CCSVI and MS.”

The very fact that only a neurologist, and no vascular specialist or interventional radiologist, was on the Speaker Panel to speak about CCSVI, a vascular condition, deems the session to be very ineffective to any MSer who had taken the time to read, and become aware of and updated on CCSVI information and studies.

C: Rob, could you please ask the CEO address all my questions here? I did copy him on the correspondence, so he is fully “aware” of this issue, although he has chosen not to respond to my messages/questions even though they regard him as well.

I have a couple more questions I wish the CEO would answer.

After the first W5 show aired in November of 2009, why did the MSSC immediately claim CCSVI, a vascular condition, as their territory...only to recommend and advise against CCSVI testing and treatment of MS patients because, according to the MSSC, a link has not been established between CCSVI and MS?

So what makes this vascular condition the MSSC’s and their neurologist medical advisors’ territory?
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