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

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Postby Gordon » Thu Aug 26, 2010 8:04 am

info@health.gov.sk.ca


Honourable Brad Wall
Premier
President of the Executive Council

Dear Sir

First of all, I want to thank you for from the bottom of my heart for starting the ball rolling with an investigation CCSVI.

CCSVI Calgary approached the Alberta Government as noted in the attached proposal. This fell on deaf ears and was completely ignored by our premier, which shocked us completely.

Secondly I urge you to ignore the MS society completely. THEY SOMEHOW FEEL THEY REPRESENT MS PATIENTS, but they do not. They have had decades and decades to do something and have done nothing.
Recent statements by Katherine Knox
http://news.sympatico.cbc.ca/local/sk/s ... r/ed7c0779 tell the story. What a silly silly press release.

They continue to think we are stupid people. We are not.

The research has been done. Please review our proposal and use this as a template to move quickly to treating people.

I STRONGLY recommend that you hire Ashton Embry of Direct-MS to assist you in setting up this trial.

http://www.direct-ms.org/aboutus.html

Ashton Embry has been instrumental in bringing CCSVI to the forefront of the Canadian public. He has been a tireless advocate of the liberation treatment not only in Canada, but around the world.

How to contact DIRECT-MS
Please contact us at any time by e-mail at
info@DIRECT-MS.org
You can also mail inquiries to
DIRECT-MS
5119 Brockington Rd. NW
Calgary, AB, T2L 1R7
Canada
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Postby PCakes » Thu Aug 26, 2010 9:03 am

Excellent letter!!

here is a suggestion from Joan Beale, to a similar post, over on facebook..

CCSVI in Multiple Sclerosis There are many doctors that DO understand the protocol and what to look for. I'm sure the new International Society for Neurovascular Disease would provide help to Saskatoon. Get their info to Brad Wall ASAP. These doctors are all testi...ng and treating around the world:
http://www.isnvd.org/
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Postby ScottieSue » Thu Aug 26, 2010 11:20 am

http://news.sympatico.cbc.ca/local/sk/s ... r/ed7c0779

"The question is, will there be more benefit than harm by doing a premature treatment trial and possibly treating people that shouldn't be in the treatment group or missing people that should be in the treatment group?" she asked.

Knox said her priority right now is to get another study off the ground that will define which patients are candidates for the procedure.


Who made her "god" that they can decide which people should or should not receive the treatment and pick which people can be candidates for the procedure?????????
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Postby PCakes » Thu Aug 26, 2010 1:32 pm

Who made her "god"

Hi ScottieSue,
I think WE did. But WE can change our minds. ;)
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Postby oreo » Thu Aug 26, 2010 1:44 pm

To be blunt (which I do real well) some of you people need to grow up and stop acting like spoiled little children having temper tantrums in the sand box.

Case in point: "Who made her "god" that they can decide which people should or should not receive the treatment and pick which people can be candidates for the procedure?????????"

No one made her 'god'. She is required by every rule of medical ethics to exercise extreme caution when conducting any clinical trial directly on human beings. For example, a person with cardio-vascular disease as well as MS should probably NOT have CCSVI treatment; a hemophiliac with MS should not have CCSVI treatment; someone with terminal cancer would not be a good subject. Screening participants is an essential part of any clinical trial. In other words, the woman is doing her job. Let her get on with it so that maybe some day we will have some solid scientific proof of CCSVI, its effects and its treatment.
Carpe Diem
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Postby Lyon » Thu Aug 26, 2010 2:16 pm

.
Last edited by Lyon on Sun Nov 20, 2011 6:35 pm, edited 1 time in total.
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Postby AMcG » Thu Aug 26, 2010 2:20 pm

Oreo

I don’t think anyone would argue that subjects clinically unsuitable should receive angioplasty. But it is not a big deal. You have to fill out a form which asks you if you have all the various taboo conditions before you get the treatment. It is standard stuff.

Knox is talking about running a trial to define which patients are ‘candidates for the procedure.’ I don’t know exactly what she means but noone else has needed to run a trial to select candidates. For a woman who does not believe in the procedure I am thinking that might amount to finding reason’s why she should not treat anybody. Or maybe just an excuse to drag her feet - she has pointed out that she has to wait for IRB approval. Now how long will that take I wonder?

I am sorry to say that I share ScottieSue’s disquiet.
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[b]I am no Child.[/b]

Postby Gordon » Thu Aug 26, 2010 2:26 pm

I do not consider myself a child.

The house is burning. There is enough research done to warrant going straight to trials ... For her to say that it may be years before treatment is totally irresponsible.

If she was my doctor I would tell her to her face taht SHE IS FIRED.

G
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.

Postby ppicklee » Thu Aug 26, 2010 2:58 pm

AMcG & Scottysue -- I too share your disquiet. We have great, informative, knowledgeable doctors in this country and I find it a great shame that people feel the need to look elsewhere for treatment. I am more than willing to sign a waiver if that is what is required. Can somebody please tell me (or PM me) why private clinics in other countries can offer this service. Perhaps a private clinic here can ? ? please me if I am lacking any information or I am out of line. I don't want to be that this a FOR SURE. Thanks.
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Postby 1eye » Thu Aug 26, 2010 3:23 pm

I have cardiovascular disease. I was Liberated last Monday. It is up to the doctor. Some doctors will perform the venoplasty only if you *do* have a second vascular disease.

I am sick of reading the 'expert' opinions by 'MS' society people. The procedure is helpful, not harmful. Just watch one.
"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 1eye » Thu Aug 26, 2010 6:05 pm

I am concerned that if other experiments are anything to go by, these children will not be properly diagnosed. I had an unofficial test by a non-radiologist using a setup he had already tested on himself with a 5MHz probe, and both he and I saw narrowing.

Then I had a test at Square One with the Valsalva maneuver that was negative.

Then I had a Liberation Procedure, and if anyone wants to see the pictures, they ain't pretty, but he ballooned both IJVs and the azygous. He worked very hard on my left side and finally succeeded.

I don't know if it has anything to do with MS, but I feel some healthier. If you want to diagnose CCSVI, use a catheter. This screening stuff is supposed to be a cheap way to rule it out. But if you have to jump through hoops, and there is evidence it could be there ('CFS', 'MS', possible May-Thurner or Budd-Chiari) please do the child a favour and use a catheter and ink.
"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 ScottieSue » Fri Aug 27, 2010 5:55 am

Oreo:

I can be blunt too - you would do well in a "Big Brother" Society where people are told what you can and can't do. I was not having a "temper tantrum" I was only voicing an opinion.
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Postby sbr487 » Fri Aug 27, 2010 6:19 am

If one compares with the approach of one of the Drs like Sclafani, Hubbard ..., its pretty clear that she is sending out only negative signals. Reading her quote I almost felt like she has been forced to do this bullshit even though she does not believe it at all.

Being neutral is one thing but being negative is something else. Looks like the study is really in wrong hands.
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 Fernie12 » Sun Aug 29, 2010 7:25 am

I agree, but the studies always have been (in the wrong hands)...now it's all coming out into the light. The only question that remains is how long until the politicians in Canada can get it straightened out - thanks Mr. Wall...
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