Letter 2 MSSC Pres & CEO Yves Savoie From MS-Sufferers

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

Letter 2 MSSC Pres & CEO Yves Savoie From MS-Sufferers

Postby Chrystal » Wed May 04, 2011 6:58 pm


Please read the letter written by a dear fellow MS-Sufferer, and endorsed by thousands (and counting) of us MS-Sufferers. The letter is directed to the MSSC President and CEO, Yves Savoie.

If you agree with the contents, please print the letter and send it to Yves Savoie with your own covering letter saying that you agree with the letter, and add any comments you wish to include in your letter.

Please Note: Mr. Savoie can delete an email, but someone has to open letters that arrive by post, or collect letters that arrive by Fax (Fax #: 416-922-7538).

Please also post this letter on other sites (Facebook, etc.) with the same objective - that more MS-Sufferers also mail/fax this letter to Yves Savoie. Thank you.


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

THE MS SOCIETY OF CANADA DOES NOT SPEAK FOR ALL MS SUFFERERS IN CANADA AND IT DOES NOT ADVOCATE FOR US

4 May 2011

Mr. Yves Savoie
President and Chief Executive Officer
MS Society of Canada
175 Bloor Street East
Suite 700, North Tower
Toronto Ontario
M4W 3R8

Fax: 416-922-7538

Dear Mr. Savoie,

There is a tsunami of science coming your way; you cannot hide from it, you cannot outrun it, you cannot stop it and, most importantly, you cannot deny it. Dr. Zamboni’s “theory” is no longer a “theory”, it has been proven and his work has been replicated.

At the annual meeting of the International Society for Neurovascular Disease (ISNVD) held in Italy in March 2011, results of studies conducted by scientists around the world were presented to the meeting’s participants. A summary of each study is available on the ISNVD website. The results of these studies show that 86% to 90% of MS sufferers have CCSVI as opposed to less than 8% of the non-MS population. Other studies resulted in clear evidence that iron builds up around the cerebral veins even in the white matter which is what mostly differentiates MS from many other inflammatory and neurodegenerative diseases.

The results of other studies that included treatment were presented. The scientists acknowledged that the highest level of scientific evidence is generated by double-blind randomized trials which require a long time for completion. However, they also recognized a well-known fact that in science, scientific evidence can also come from observational studies which independently and scientifically measure the effects of a certain treatment in a very high number of patients. Consequently, the ISNVD meeting participants heard the results of observational studies involving over 1,000 people.

For example, Dr. David Hubbard reported the results of a study he conducted in San Diego using functional MRI. Functional MRI is a real-time technique which makes it possible to identify the plastic changes that the brain undergoes during functional brain activities. The cognitive skills of a group of 20 subjects with MS were measured by having them perform a series of memory and operational drills under functional MRI control. After the necessary examinations, angioplasty was performed on all 20 subjects with MS. When re-checked using functional MRI, they showed significant improvement in their cognitive skills which no longer differed from those of the healthy controls used for comparison.

The results of another study involving treatment were presented by Dr. M. Mehta from Albany Medical Center, NY, who studied 150 MS patients where he identified almost 300 jugular and azygos veins with significant stenosis and performed angioplasty. In the post-operative phase, he monitored important aspects such as chronic fatigue which is one of the most disabling symptoms of MS and one with no therapeutic response.

Chronic fatigue improved significantly in all patients. This was further confirmed by more than 25% increase in the quality of life scores as measured one year after treatment by psychiatrists who were unaware that the patients had been treated.

Dr. M. Zarebinski of Poland presented the data of 420 patients who underwent venoplasty in Warsaw. This study confirmed the safety of the treatment, since in this and all other studies no complications or deaths were recorded. The study also confirmed significant improvement in chronic fatigue and quality of life. (see http://ameds.co/ftp/CCSVI_Treatment_and_Results at AMEDS_Centrum.pdf).

The ISNVD conference also heard the results of animal studies, presented by Stanford University, which demonstrated a correlation between reduced venous function and impaired motor ability. Some of the neurologists who have far too much influence with the MS Society and who demanded “mouse studies” will not particularly like the results of the Stanford study but … the mouse study was done.

The above is a summary of some of the studies presented at the ISNVD conference. They will be published in peer reviewed scientific and medical journals.

Dr. Gary Siskin and Dr. Kenneth Mandato, Albany Medical Center, (Albany, New York), presented a study at the Society of Interventional Radiology’s 36th Annual Scientific Meeting held in Chicago at the end of March. The results of angioplasty performed on 231 MS sufferers clearly demonstrated that the treatment is safe and can be performed with minimal risk of significant complication.

Dr. R. Zivadinov et al (Buffalo) published a study on April 7, 2011 (10.3174/ajnr.A2386) in which the researchers confirm that conventional MRV has limited value for detecting CCSVI. The researchers found that 90 to 100% of participants with MS had venous malformations when tested by doppler ultrasound and that the results of the doppler tests were confirmed when angioplasty was performed. The study Dr. Zivadinov published on 13 April in Neurology (journal of the American Academy of Neurology) further confirms the presence of CCSVI in MS sufferers. This study has been viewed as disproving Dr. Zamboni’s theory but, in fact, it confirms it. Whether or not CCSVI is a causative factor in MS is irrelevant.

The tsunami of science is there and the unnecessary studies currently being funded by the MS Society are, to put it mildly, rather superfluous and totally out of touch with the rapid evolution of the science surrounding CCSVI and its clear association to MS. Regardless of the usual MS Society “spin”, we all know that the Society funded studies are being influenced by MS neurologists who oversee the research and who have a vested interest in proving that CCSVI has no correlation to MS. So, we know what the studies will conclude; we knew that before the studies began. We have no faith in the MS Society funded studies and consider them to be nothing more than a stalling tactic and propaganda for the Society when needed.

We do not expect the MS Society to change its policies regarding CCSVI. The Society has far too much to lose as do the MS neurologists who influence it. However, the Society owes MS sufferers answers to the following questions:

1. where and when was the theory that MS is strictly an autoimmune disease proven and replicated?

2. has the Society read the following studies on the efficacy of the disease modifying drugs it promotes (Capaxone, Rebif, Avonex, Betaseron)? In summary, the studies show that the drugs are not effective in slowing the progression of MS.

Boggild M, Palace J, Barton P, Ben-Shlomo Y, Bregenzer T, Dobson C, Gray R., Multiple sclerosis risk sharing scheme: two year results of clinical cohort study with historical comparator. BMJ. 2009, 9 pages.

Ebers, G, Traboulsee A, Li D, et al., Analysis of clinical outcomes according to original treatment groups 16 years after the pivotal IFNB-1b trial. J Neurol Neurosurg Psychiatry, in press, 6 pages.

Veugelers PJ, Fisk JD, Brown MG, Stadnyk K, Sketris IS, Murray TJ, Bhan V., Disease progression among multiple sclerosis patients before and during a disease-modifying drug program: a longitudinal population-based evaluation. Mult Scler. 2009 Nov;15 (11):1286-94.

3. the Society explain why angioplasty is so dangerous for MS sufferers while Tysabri, linked to 111 cases of permanent infection and 22 deaths as of 1 April 2011, is so much safer?

4. can the Society explain why it lobbied provincial governments to fund Tysabri despite knowing the danger posed by this drug? (e.g., letter dated April 2009 and signed by Yves Savoie and Dr. Mark Freedman)?

5. can the Society explain why it wrote at least one letter to an Ontario MPP urging him not to support CCSVI funding in the Ontario legislature?

6. can the Society explain why it ignores the consensus document issued by the International uni0n of Phlebology in December 2009 in which venous experts from 47 countries (including Canada) concluded that CCSVI is congenital and a likely causative factor in MS?

7. can the Society explain, given that it ignores the consensus document prepared by the International uni0n of Phlebology, why it based its push for MS drug treatments on the recommendations of the same type of consensus document? (www.nationalmssociety.org/download.aspx?id=8)

8. can the Society explain why it entered into an alliance with CIHR and hosted a meeting in August 2010 of so-called experts that excluded all medical professionals with any experience with and knowledge of CCSVI but that included many so-called experts who had publicly voiced strong opposition to CCSVI?

The Society must understand that it has, through its actions, destroyed any trust that existed before November 2009. We will not donate any money to the Society. We urge other people, including corporate sponsors, to think very carefully before giving money to an entity that not only has failed the people it exists to support but that also has actively worked against those same people.

We want the Society to stop claiming to speak on behalf of MS sufferers or for all MS sufferers in Canada. Clearly, the Society has lost the right to make that claim.

Finally, The Society must understand that we are not going away, we will not be quiet and we will win.

Christopher Alkenbrack (Founder, CCSVI-IVCC Information FB page, 2,115 members)

Don Ayres (Vice-President, Founder, CCSVI Medicine Hat, 40 members)

Michael Ball (President, CSSVI Calgary, 78 members)

Jennifer Crossfield

Sherry Drew (Founder, Stop the MS Society, 401 members)

Judy Filipkowski

Steve Garvie (President, CCSVI Foundation Canada, 30 Fellows in 7 provinces)

Chrystal, Gomes

Shara Grice (Administrator CCSVI in BC Information FB page, 3,055 members)

Linda Hume-Sastre

Siobhan MacQueen (Secretary, CCSVI Alberta, 1,267 members)

Carol Prest

Amy Preston (Founder, CCSVI Brockville, 91 members)

Colleen Robinson (Founder, CCSVI Southwestern Ontario, 58 members)

Aaron Thompson (President, CCSVI Edmonton, 428 members)

Michelle Walsh (Founder, Costa Mesa/Newport Beach CCSVI 379 members)
Last edited by Chrystal on Wed May 04, 2011 7:53 pm, edited 1 time in total.
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Postby esta » Wed May 04, 2011 7:49 pm

AWESOME WORK!!!!!!!!!!!!!!!
i sent this to our local MS coordinator to help her see where we're coming from, and why they got way less money at the walk. i feel for them, as they care, and work hard on our behalf. they're hands are tied to some extent, because there work is never done.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby Chrystal » Wed May 04, 2011 8:00 pm

Esta - the MSer who wrote the fantastic letter above is a brilliant lady who has been doing a ton of great work on the CCSVI front.

Anyone with a conscience will understand where we are coming from, and know that the MSSC has literally been holding our access to vascular health care hostage with their recommendations and advice. It sounds like your MS Coordinator is such a person.

Take care and keep well.
Chrystal
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Postby Brightspot » Wed May 04, 2011 8:14 pm

Thanks for the great post Chrystal!

I wrote a letter to Yves and it is an envelope to post tomorrow with a copy of the wonderful letter supplied.

I also emailed a copy of my letter with this one attached to the MS Society at this address info@mssociety.ca<info@mssociety.ca> with subject as "Letter to Yves Savoie".

Have also forwarded it by email to others with a request to keep the messages flowing to Yves.
Last edited by Brightspot on Wed May 04, 2011 8:15 pm, edited 1 time in total.
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Postby PointsNorth » Wed May 04, 2011 8:14 pm

A Nice Summary of what really ills us. Thanks Chrystal.

Best, PN
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Postby Chrystal » Wed May 04, 2011 8:29 pm

Thanks PN & Brightspot for your letters to Yves.

I think I can give the name of the great letter's wonderful author since I saw another MSer has already posted it online. All our huge thanks should go to Linda Hume-Sastre!!
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Postby Chrystal » Wed May 04, 2011 9:26 pm

This afternoon, I did a Google/Bing search, typing: mssociety.ca to look for their contact info., and was disgusted to see this new link appear at the top of the page of links that turned up.

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

Multiple Sclerosis - Is it contagious? Fatal?
What are the symptoms? Find out and give.
www.mssociety.ca

When I clicked on the above link, the page opened up with the following messages:

Help End MS. Give Now.

Other ways to make a difference
Pledge a walker participating in the MS Walk
Pledge a cyclist participating in the RONA MS Bike Tour

Become a Research Partner
with a gift of a $1000 or more

Make a gift of stocks or securities
and receive tax advantages

Leave a legacy of hope
by including the MS Society in your will

Join the Family and Friends Drive
and reach out to family members, friends and neighbours

Double the value of your gift
if your company has a matching gift program

Get in touch with us
to speak to a representative

....

Donate Now
Learn about our giving options
Single Gift
Monthly Giving
Family & Friends Drive
Gift In Memory
Gift In Honour
Research Partner Program
Matching Gifts Program
Gifts of stocks or securities
Legacy Giving
Our donor pledge
Security statement
Donate with confidence
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

If - like thousands (and counting) of us MS-Sufferers - you do not believe for one second that the solicited donations are intended for the purpose of "ending MS", please send your letters in and post everywhere...before they start selling the flowers off our gravesites to fill their coffers.
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Postby Chrystal » Fri May 06, 2011 1:10 pm

bump...
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Postby PointsNorth » Fri May 06, 2011 2:57 pm

I didn't send to Yves but did send to a regional President I have ongoing communications with. I like to keep him/her current!!

best, PN
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email from a Canadian MP's office

Postby 1eye » Tue Aug 23, 2011 8:41 am

I found this e-mail in my inbox this morning……



Cathy


From: Karen Copeland [mailto:karen.msdragonslayer.copeland@gmail.com]
Sent: August 23, 2011 9:39 AM
Subject: I have a question for you



Image



--

Pharma and Big Pharma - 2 different things

http://its-time-to-slay-the-ms-dragons.blogspot.com/
"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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