supporters of Bill Peart

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

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Postby zinamaria » Tue Mar 22, 2011 7:38 pm

This is beyond tragic. I cannot even bring myself to repeat what all of you have said, and yet I feel it and I am so very sorry, and I send my prayers to the family.

"Attention is the natural prayer of the soul" (simone weil, who is known for saying it but took it from someone else).
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Postby erinc14 » Wed Mar 23, 2011 6:54 am

Hippocrates would have called the police.


:!: :!: :!:
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Postby Cece » Mon Mar 28, 2011 6:28 pm

Q: On the subject of MS, that is the big story in alternative care. Why isn't the province doing clinical testing to see if the procedure can be done safely and in Ontario?

It's premature to do that. There is research underway now looking at the co-relation between MS and veins that are blocked. When and if that research points to clinical trials as the next step, then we will proceed with that. It is very important we let the scientists and researchers do their work. We don't want to subject people to procedures that do carry some risk.

From an interview with Ontario health minister Deb Mathews.
( www.lfpress.com/news/london/2011/03/21/17696576.html )

Then why deny compassionate exemptions. At that point a person is past the point where risk matters.
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Postby PCakes » Mon Mar 28, 2011 8:08 pm

Cece wrote:Then why deny compassionate exemptions. At that point a person is past the point where risk matters.


The reasons, imho, are twofold. One, legal liability. Not the liability in performing the treatment, waivers could be signed, but if it works how could there be any explanation why those sadly taken were denied this chance? Canada's Tainted Blood Bank Scandal still rings in their ears.
Two, the line. Where is it drawn to keep the theory contained? If compassionate treatment were allowed and successful they might 'explain' away the first case but then there would be another and another and god willing another. Their placebo explanations would wear thin along with any excuse to further deny clinical trials and treatment.

Please.. CANADA VOTE LIBERAL!!
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Postby Cece » Wed Mar 30, 2011 3:33 pm

Liability and where to draw the line...yes, those both are probably in play. :(

This is a facebook note from January about another patient who passed away waiting:
www.facebook.com/notes/ccsvi-in-ms-toro ... 5118649919
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Postby Cece » Fri Apr 15, 2011 12:04 pm

Many people with MS can't afford to wait until these theories are proven or disproven, there is nothing else working for them. How can the MS Society not support treatment for CCSVI, at the very least on a compassionate basis?

We recognize and empathize with the challenges of living with MS, and the desire to try any procedure that might work, however, the MS Society of Canada cannot advocate for a procedure that is not yet backed by scientific evidence. We believe this would be fundamentally irresponsible of us as an organization with people affected by MS as our first priority.

Living with the uncertainties that come with a disease like MS is very difficult. This is particularly the case for those with progressive forms of MS. While there are ways of managing progressive MS in terms of symptom management, coping strategies, and day to day living, there are currently no effective treatments for this type of MS. This can be very disheartening.

In some diseases or conditions, physicians can access experimental treatments on compassionate grounds through Canada's Special Access Program. This access is limited to patients with serious or life-threatening conditions on a compassionate or emergency basis when conventional therapies have failed, are unsuitable, or are unavailable. Because the life-span of persons with MS is very close to that of the general population, MS is not generally considered a life-threatening illness.

This is from the MS Society of Canada's webpage: http://ccsvi.ca/questions.html#venous-angioplasty

MS is generally not considered a life-threatening illness....and this is a reason to deny compassionate care. Having no effective treatments can be "disheartening."

Dr. Zamboni himself has advocated for compassionate care.
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Postby 1eye » Fri Apr 15, 2011 12:34 pm

I hope the life span of the person who wrote that approaches that of the general population, without actually getting that far. In fact, what shall we say shall be an acceptable approximation? Shall we let that person die if they are, within, say, 15 years of the general population? 20? Surely 50 years of age would be a good 'innings', eh? Ought to be happy with forty! 35 is a good age isn't it? Maybe we could get a ruling from the MS Society...
Maybe they could convene a panel...
"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 HappyPoet » Fri Apr 29, 2011 11:02 am

<tears>
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