Canadian experts & MS Society dismiss CCSVI therapy

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

Postby kiwee » Wed Sep 01, 2010 3:37 am

conspiracy theory;
to these idiots, we are worth more without treatment.
think of the blow we would hit serono or any of the drug suppliers with if we all went without our meds (20-24l per year per person)......... although everyone says we need to stay on our meds.
i am heading off to delhi, india in 2 and a half weeks and my neuro is awaiting my results.
at this point, all we can do is try to change these people by showing them the results and talking about it one at a time.
i met someone from the mss last week and although she was rather new with the company, i felt like spitting in her nametag as she works for the very same organization that is battling us every step of the way.
made sure to get her card and told her that i am going to india for treatment. she'll be getting a copy of my blog and copies of all my reports pre and post op. i swear i will speak to someone at her office about this.

another link;
<shortened url>
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Postby L » Wed Sep 01, 2010 4:10 am

Stacemeh wrote:
financial reasons (10 billion of them).


It would be so nice if we could quit trying to compare medicine to the oil and gas industry.


:roll:


Yes, it would be nice but the trouble is it's not such a bad comparison. There's lots of articles out there that deal with this, but here is just one.
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Postby Blaze » Wed Sep 01, 2010 4:47 am

This has to be a real downer for Dr. McDonald. I think he was hoping for funding of his study through CIRH. With Ontario still holding out against funding trials, I'm not sure where that leaves Dr. McDonald's study.
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Postby BooBear » Wed Sep 01, 2010 5:03 am

Seriously, what a crock of shit.

There isn't enough scientific evidence to conduct a scientific trial. But the scientific trial would provide scientific evidence.

And WE are allegedly the ones with cognitive issues.

Since my liberation, I am a new person. I have no more fatigue. Brain fog is gone. Nothing hurts anymore. I have not been as active on this board because I have been living my life. Isn't that great?

But don't pay attention to my experience. It's purely anecdotal.
Three veins angioplastied.  One renewed life.  
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Postby Billmeik » Wed Sep 01, 2010 6:02 am

Once again the reason they are calling for a hold on trials is because people much smarter than you or I see problems with Zamboni's theory. No one is calling for an end to CCSVI trials but they are expressing caution in moving forward because so far there has been NO OVERWHELMING EVIDENCE SHOWING THAT CCSVI IS RELATED TO MS. There has been a lot of anecdotol information but no hard science. Doctors and Researchers use scientific facts to make decisions because that is how they have been trained. The problem is not the NMSS, neurologists, etc, it is that no one has been able to replicate Zamboni's original resuts or really even get close to his findings of 100% correalation between MS and CCSVI.


having been on this forum since november I have seen a lot of replications. Simka's 381 patients with 97% is going to be huge. But there are a LOT more. the numbers from jordan kuwait are over 80%...there are numbers coming back from india, u.s. scotland, costa rica, Bulgaria, mexico, and Oz... to say there are no replications is to say 'Im stupid and I live with my head in the sand' .

That's why I like it better when they argue about what causes ccsvi. Denying it's existence is so last year.
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Postby erinc14 » Wed Sep 01, 2010 6:31 am

L wrote:
Stacemeh wrote:
financial reasons (10 billion of them).


It would be so nice if we could quit trying to compare medicine to the oil and gas industry.


:roll:


Yes, it would be nice but the trouble is it's not such a bad comparison. There's lots of articles out there that deal with this, but here is just one.


here are words i've come across in negative articles :

hoax
placebo
controversial
experimental
high tech faith healing
chasing unicorns
pseudoscience
much-hyped
hysterical
anecdotal
dubious

the last 2 are words general motors used in publications to stop demand for the highly successful electric car. seems the tactics are similar .
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Postby Fernie12 » Wed Sep 01, 2010 6:31 am

Here's Dr. MacDonald's 2 cents worth:
http://www.ctv.ca/CTVNews/TopStories/20 ... es-100901/

How is is that this committee only looked at 9 papers on CCSVI? There are currently 63 in the world!!
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Postby Blaze » Wed Sep 01, 2010 7:35 am

Fernie: They only looked at the studies that would tell them what they wanted to hear--just like the MS Society is only funding studies that will tell them what they want to hear.

Now, Surprise, Surprise! Our Canadian Health Minister Leona Aglukkaq is accepting the "prudent" advice of CIHR. She says CCSVI treatment is "invasive" and "too risky" for human trials. Yet, she welcomes contributions of povinces like Saskatchewan toward funding trials.

Here's link to the article in today's Globe and Mail:

<shortened url>
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Postby MsJae » Wed Sep 01, 2010 1:11 pm

Ms. Aglukkaq said she welcomed the resources that provinces like Saskatchewan have directed towards the issue.

But Mr. Savoie said any real clinical trial would require a pan-Canadian approach involving at least 1,000 patients. "A single province, or a single site, would simply not be a way to get to the definitive answers that we all want."

Saskatchewan has said it will proceed with trials regardless of the direction taken by the federal government.


Hmmmm, you could find at least 1,000 MS patients within a 2 km radius in Saskatchewan. What would satisfy Ms. Aglukkaq won't satisfy Mr. Savoie. This hot potato throwing is totally disappointing me, my friends and family. Not only do I have MS, my older sister does as well.

Money talks, and mine is yelling at me to not let it go to the MSS, and I hear it talking to my family, my friends, my friends friends and so on.

Oh, obviously no PC's suffer with MS, or know anybody with MS.

What a shame that our health care is in the hands of politicians/dimwits who value their own opinions over people's health and welfare.

:evil:
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Postby nicknewf » Wed Sep 01, 2010 1:24 pm

I am literally fuming right now. How cruel and unusual is this - wait 2 years to do treatment studies? Everyone who suffers any symptom progression, or any symptoms while waiting for these guys to pluck their noggan's out of the re behinds should consider who is responsible - probably these unreasonable, and biased obstructionists.
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Postby MrSuccess » Wed Sep 01, 2010 7:46 pm

okay - here's my take on this :

The Federal Health Minister of Canada [ - a politician ... NOT a doctor ... according to her ... ] has consulted with her experts in CCSVI . And taking their advice .... has decided not to create a Trial . Yet.

Pardon me for laughing ..... but she may as well have gathered a room full of dentists or veterinarians ...... for the advice given .

Not ONE of her experts can ..... or has the ability ..... to perform CCSVI corrective procedures .

I would suggest Ms. A ..... spend some of the Canadian taxpayers money ..... and travel to Italy or Stanford California or Albany or Poland ...... and SEE and ASK things for herself.

If that's not possible ...... assemble a NEW expert group ..... they are willing to travel ..... Zamboni ... Dake ..... Siskin ..... Mehta .... and ALL the other incredible CCSVI medical experts .

But they might not be as available as the Health Ministers so-called experts ...... as they are busy HELPING those with CCSVI .

And as I expect ...... when the heat get's too hot for Health Minister A ...
the Gov't of Canada ..... will simply shuffle the Cabinet .....

And a new - equal or worse - Health Minister ..... will take over .....

How about an actual doctor this time ?

Say ....... Sandy McDonald ...... :wink:




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Postby beerduff » Wed Sep 01, 2010 8:09 pm

I swear by Apollo, the healer, Asclepius, Hygieia, and Panacea, and I take to witness all the gods, all the goddesses, to keep according to my ability and my judgment, the following Oath and agreement:
To consider dear to me, as my parents, him who taught me this art; to live in common with him and, if necessary, to share my goods with him; To look upon his children as my own brothers, to teach them this art.

I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.

I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion.

But I will preserve the purity of my life and my arts.

I will not cut for stone, even for patients in whom the disease is manifest; I will leave this operation to be performed by practitioners, specialists in this art.

In every house where I come I will enter only for the good of my patients, keeping myself far from all intentional ill-doing and all seduction and especially from the pleasures of love with women or with men, be they free or slaves.

All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal.

If I keep this oath faithfully, may I enjoy my life and practice my art, respected by all men and in all times; but if I swerve from it or violate it, may the reverse be my lot.
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Postby erinc14 » Thu Sep 02, 2010 5:31 am

actually i'll invite her over for lunch . she can feed me, watch me have a choking fit and brush my teeth . think she'll accept ? :roll:
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Postby HarryZ » Thu Sep 02, 2010 6:08 am

scorpion wrote:Once again the reason they are calling for a hold on trials is because people much smarter than you or I see problems with Zamboni's theory. No one is calling for an end to CCSVI trials but they are expressing caution in moving forward because so far there has been NO OVERWHELMING EVIDENCE SHOWING THAT CCSVI IS RELATED TO MS.


While you are correct in stating that there is indeed no overwhelming evidence, let me take this statement a step further.

For decades, researchers have not been able to provide overwhelming evidence that MS is an autoimmune disease. We have read in the past few years that some MS researchers (ie: Dr. P. Behan) go as far to say that the autoimmune theory is wrong and we are looking in the wrong area to solve the mystery.

Yet all of the current approved MS medications are powerful immune-suppressant drugs! Billions of $ have been spent on these drugs which don't do all that much in the long run for MS patients. Yet, here they are being sold at record levels to fight MS with no overwhelming evidence to show that MS is an auto-immune disease!

But these medications have extremely powerful financial backing and clout behind them. CCSVI does not and it is now up against the established MS world of medicine. The battle is starting and I fear it will be ugly.

Harry
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Postby bruce123 » Thu Sep 02, 2010 6:19 am

If there was a drug that had as low a risk as angioplasty and provided dramatic improvments to 30% of MS patients, how fast do you think it would be approved for use in Canada?

My guess is that we would all be taking the drug before you could say "pharmacutical fillabuster".

Bruce.
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