Wheelchair Kamikaze responds to Canadian anti-CCSVI decision

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

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Postby concerned » Thu Sep 02, 2010 11:38 pm

Although I agree treatment trials to figure out if it can help now for people who need it are necessary, I can also see why the MS society would want to wait to see if their studies to see if CCSVI is even a 'thing' show that it is a 'thing'. And studies of the procedure itself are underway, so why spend more money on trials when we can just check the results of the other trials.

On the other hand, maybe some of the trials underway are being performed by people with a financial stake in seeing CCSVI being a proven condition (such as doctors who are already performing the procedure), and maybe a third party testing the procedure would be more desirable.
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Postby se1956 » Fri Sep 03, 2010 12:07 am

The results from BNAC alone should be enough to justify treartment trials.

At the moment for all participants it's a battle for "market share".

R.
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Postby concerned » Fri Sep 03, 2010 12:13 am

What results from BNAC? Where are they published?
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Postby sbr487 » Fri Sep 03, 2010 12:15 am

concerned wrote:What results from BNAC? Where are they published?


Thats a surprise!!!
If they are not published, why do your favorite neuros and MSS folks keep quoting them?
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby se1956 » Fri Sep 03, 2010 12:47 am

@concerned

http://hosted.mediasite.com/mediasite/V ... ebb41a8ba6


I did NOT write

... justify treatment ....

I wrote

... justify treatment TRIALS...

So, everyone sometimes needs some help.

R.
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Postby Blaze » Fri Sep 03, 2010 4:29 am

Marc: Thanks for your support from south of the border. You can be assured Canadians are not giving up the fight.

Concerned: If you look at who did and didn't get the grants to research the link between MS and CCSVI, you will see the MS Society seems to be determined to disprove Dr. Zamboni.

If you look at the make-up of CIHR committee that has rejected clinical trials, you will find many of them are neurologists who are strong proponents of drug therapy. No member of the committee had expertise in CCSVI.
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Postby Cece » Fri Sep 03, 2010 7:19 am

marc wrote:On pages 9 and 10 of the document put out by the CIHR http://mssociety.ca/ccsvi/resources/201 ... tFINAL.pdf
is a list of all of the experts who participated in making the decision to not fund treatment trials. A little googling should easily turn up e-mail addresses and phone numbers for most if not all of these experts. I'm not usually one to advocate open insurrection, but in this particular case I believe that these people should hear from the human beings their decision has impacted, which includes literally every single MS patient in the world, each of whom stand to benefit if CCSVI proves to play a part in the MS puzzle. I urge people to contact these luminaries, and in very polite, rational, but no uncertain terms let them know the misery that comes with waking up each day with MS, and the potentially calamitous effect their decision to delay CCSVI treatment trials has had on them and their loved ones.

Let me be absolutely clear, I am not promoting the harassment of these individuals. Contact with them should under no circumstances be in the form of epithet filled irrational harangues, but rather in personal stories of desperation, disability, and hopelessness. I am calling for advocacy, not agitation.

I love a letter-writing campaign. You'd think one email wouldn't make a difference...and it doesn't, on its own...but hundreds and thousands of emails are hard to ignore.

These guys waffled on their decision. They listened to the MS Society which took a stance against us yet again. I agree with Marc, they should hear from us too.
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Postby MrSuccess » Fri Sep 03, 2010 9:19 am

good write up , marc . well done .

I'd like to put the anti-CCSVI decision into more laymans terms for those having difficulty understanding what happened.

So ... here goes.....


Using the Court system as an example .........

A hearing was arranged and a fellow named Zamboni was brought before the Court and accused of being a charlatan , hell bent on extracting millions of taxpayers $$$$ on a dubious placebo -effect medical procedure , that has not a single shred of evidence according to the District Attorney.

The judge , Leona Aglukkaq , listened intently as over 10 so-called expert Bastards ..... each in turn ..... gave testimony against the accused .. Mr. Zamboni .....

A vacant defense counsel ........ called no witness' ..... to defend the poor undefended accused .

No witness's for the accused were called.

Well , there you have it , announced the judge . Case closed.

I rule in favor of the DA. Unless some further information comes to light .... in the future .




Understand now ?




What should have happened ..... is an EQUAL .... representation from both sides should have had EQUAL chances to state their case ......
This clearly did not happen .







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Postby sbr487 » Fri Sep 03, 2010 9:23 am

MrSuccess wrote:The judge , Leona Aglukkaq , listened intently as over 10 so-called expert Bastards ..... each in turn ..... gave testimony against the accused .. Mr. Zamboni .....


And this happened in 21 century?
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby concerned » Fri Sep 03, 2010 10:35 am

sbr487 wrote:
concerned wrote:What results from BNAC? Where are they published?


Thats a surprise!!!
If they are not published, why do your favorite neuros and MSS folks keep quoting them?


Which neuros and MSS folks are my favorite? I've only heard of one or two, that's it. I thought they talked about them all the time because those are the numbers they (BNAC) gave at a press conference and maybe on the web.


EDIT: Wait, are you implying Freud has quoted the BNAC numbers?
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Postby concerned » Fri Sep 03, 2010 10:48 am

se1956 wrote:@concerned

http://hosted.mediasite.com/mediasite/V ... ebb41a8ba6


I did NOT write

... justify treatment ....

I wrote

... justify treatment TRIALS...

So, everyone sometimes needs some help.

R.



I don't get it. Are you saying you need help?
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Postby welshman » Fri Sep 03, 2010 11:03 am

Thank you Marc for your always enlightening writing. Great news that the Dr Mehta trial will begin shortly, while the MS Societies waste $2.4 Million proving what's already been proven instead of backing trials that will show whether or not CCSVI is indeed one of the links in the MS puzzle.
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Postby ozarkcanoer » Fri Sep 03, 2010 11:16 am

BNAC is currently working very hard for us !!! Let's not forget that they were the first to listen to Dr Zamboni. They were the first to start CCSVI clinical trials. Dr Zivadinov was the first American neurologist to put his reputation on the line by seriously researching CCSVI. Their numbers are worth looking at. They will be publishing more. Ashton Embry is 1000% behind them with his challenge grants. Remember that YOU can help BNAC. They have NO NMSS money and NO pharma money.

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Postby ozarkcanoer » Fri Sep 03, 2010 11:18 am

I forgot to say how much I love your blogs, Marc. I've signed up for your interview !!!

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