MS Ontario Writes to Ontario MPPs--To NOT Fund CCSVI!

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

MS Ontario Writes to Ontario MPPs--To NOT Fund CCSVI!

Postby Blaze » Sun Jul 11, 2010 4:40 am

Ouch! I've just learned MS Ontario recently (June 30) sent an e-mail to Ontario MPPs advocating NOT funding CCSVI treatment through public health care. I suspect other provincial divisions may have done the same.

Their message is lengthy, but in the beginning it states "I am sure I need not tell you of the importance of robust medical evidence being available before treatments are reimbursed by our public health care system to improve the health of Canadians."

Towards the end, the message states "If and when the evidence required for public reimbursement is established, the M.S. Society will ask provincial governments to insure the procedure and 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 safe and efficacious."

The message is signed "Warmest Regards" John Clifford, Chair, Ontario Division Board of Directors.

MS Canada CEO Yves Savoie recently called the MS Society "a house divided." At least he got that right!

I'm temped to end my over 20 year membership. But, if those of us who believe in CCSVI do that, we will be simply allowing their madness to continue unabated as they claim to represent people with MS to government and others.

Do Canadians in other provinces know if their politicians received similar correspondence?
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Postby TMrox » Sun Jul 11, 2010 5:25 am

Blaze thanks for sharing this info.

People are being denied the right to be tested and treated for a recognised vascular condition on the basis that there is no enough research evidence of risks and whether treating CCSVI might alleviate some MS symptoms.

Yet on the other hand, this kind of emails show that some people (whom obviously consider themselves experts) are deeply entrenched in their orthodox positions and are not even allowing the possibility of conducting more research. What are they afraid of? Being proven wrong?
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Postby oreo » Sun Jul 11, 2010 8:01 am

"People are being denied the right to be tested and treated for a recognised vascular condition ... "

I keep seeing this statement made by CCSVI protagonists but I have yet to see where the proof of this recognition actually exists. In my world that would mean recognition by either Health Canada or the Canadian Medical Association.
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Postby TMrox » Sun Jul 11, 2010 9:14 am

In December 2009, the consensus of the international uni0n of phlebology
(experts from 47 countries from the vascular community) agreed to categorise CCSVI as a type of truncular venous malformation.

Simka testimony in Canada reminded us that the most important question regarding treatment CCSVI is the safety management strategy. Such management has already been recommended by the consensus
http://csvi-ms.net/en/content/consensus ... y-iup-2009

There are plenty of blogs and youtube videos showing venography images consistent with CCSVI. These don't count as evidence, nor the big stenoses I had in my jugular and azygous.

But here are a few articles showing that CCSVI does exist.
http://www.fondazionehilarescere.org/eng/index.html

The editorial of CMAJ about CCSVI reminds us that the controversy is not on whether CCSVI exists or not. The controversy is whether treating CCSVI can be used as a novel treatment for MS. For that we need research to assess whether the correlation found between CCSVI and MS suggests a causal relation or not. Most importantly whether treating CCSVI could alleviate symtpoms (and relapses) among pwMS. Up to date there is very limited research on that.

People lobbying not to fund CCSVI research are preventing what the CMAJ asked patients: "To demand evidence that such treatment works for MS".

I should demand evidence that leaving blocked veins is good for my health.
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Postby Cece » Sun Jul 11, 2010 10:16 am

I find the actions of the MS Society appalling.

Time to turn to either the CCSVI Alliance or the Reformed MS Society IMO.

This is a potential real enormous breakthrough in MS. The MS Society has taken its stance against it. All their influence and money, working against us instead of for us. I do not forget that one of the irb objections to Dr. Sclafani's proposal was the MS Society's statement against having these procedures done.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Someday » Sun Jul 11, 2010 10:16 am

Yes, CCSVI is a recognized vascular condition according to the Consensus Document of the International uni0n of Phlebology - of which Canada is a Member Country.
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Postby mangio » Sun Jul 11, 2010 12:40 pm

The Pan-Vascular group will go along way to helping end this cartel.
Ironic that their stance may turn out to be one of the most defining moments in this quiet but powerful revolt. A new day has dawned.
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Postby thornyrose76 » Sun Jul 11, 2010 12:56 pm

What gives these God damn people the right? Cancer patients get experimental treatments all the time in an effort to save or prolong their lives. No one in this instance puts up road blocks, so why with MS PATIENTS??
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Postby mangio » Sun Jul 11, 2010 11:24 pm

It's a very good question. Without Dr Zamboni's groundbreaking research
and academic research centre, Dr Simka, Dr Haacke, Buffalo, Direct-MS, the Hubbard Foundation, CCSVI Alliance, the surgeons/physicians, imageing experts/centres,
Italian and American patient pioneers, advocates, media and
bloggers/vloggers it's anyones guess where this would all be.
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the ugly truth

Postby hwebb » Mon Jul 12, 2010 12:51 am

Cancer patients get experimental treatments all the time in an effort to save or prolong their lives. No one in this instance puts up road blocks, so why with MS PATIENTS??


I hate to be cynical thornyrose...but dead patients aren't worth anything to the medical system. If patients are kept alive, they're still using drugs and medical services. Conversely, if you successfully treat PwMS....they're value to the medical industry is reduced (no drugs, no neuro visits).

The ugly truth.
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Postby SickButHappy » Mon Jul 12, 2010 2:23 am

TMrox wrote:I should demand evidence that leaving blocked veins is good for my health.


love it! you're right!!
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Postby Cece » Mon Jul 12, 2010 8:04 am

SickButHappy wrote:
TMrox wrote:I should demand evidence that leaving blocked veins is good for my health.


love it! you're right!!

Gotta agree! Inaction is a form of action.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby sbr487 » Mon Jul 12, 2010 8:15 am

SickButHappy wrote:
TMrox wrote:I should demand evidence that leaving blocked veins is good for my health.


love it! you're right!!


I think Putnam proved it long back (using their model) that it is not. What else is needed?
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Postby dodgeviper » Mon Jul 12, 2010 8:34 am

Another possible reason is the embarrassment factor:

"All this time we thought we knew what we were doing, using the immune system attacks theory taught in medical colleges, and then some Italian guy says it could be a circulatory problem instead?"

CCSVI questions the expertise of a segment of the medical community, and experts in every field I know of usually don't like a "lay person" pointing to evidence that questions their knowledge and career-long assumptions.
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Postby TMrox » Mon Jul 12, 2010 8:40 am

Perhaps docs need to see a mouse model. Block their jugulars and azygous and see whether that interferes with their immune system leading to neuro condition.

Or, they might need to see that their healthy control groups with CCSVI later on develop MS.

Or, they might need to see that those Transverse Myelitis or Clinicaly Isolated Syndrome patients with CCSVI later on develop MS.

Who knows what they need? I’m not a MD nor an expert. What I think will be important is to give resources to the supporters and nay-sayers to test their academic curiosity and objections to CCSVI.

I was diagnosed with CCSVI and I don’t have MS. Should I have waited for evidence that leaving blocked veins is good for my health?

I de-stenosed my veins for me to see if that would improve my limited quality of life. I was house-bound for 14 months because of Transverse Myelitis. After the angioplasty my life changed. I have received follow-up vascular testing in my country of residency. In that sense I have not been discriminated against, is it because I don’t have MS? I don’t know the answer to that.
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