IVCC/CCSVI, articles et liens de ce dimanche.

Publié le par Handi@dy

Barre google de traduction indispensable!

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par CCSVI in MS Toronto, samedi 2 octobre 2010, à 01:02

 

This is just an initial inquiry to see if there is interest in the Toronto area for a trip to support our friends in Quebec City, Quebec.

 

On October 19, 2010 at 13:00 there will be a rally on at the Quebec parliament followed by a personal presentation inside parliament  from our friends in Quebec. It will be presented personally by our friends Francine Deshaies and Christopher Alkenbreck. who will meet with the Quebec Health Minister in person. Let''s all show our support by driving down and helping them show how united across this great country of Canada those suffering from MS can be by joining together in Quebec City.

 

Plans are sill be worked out to save on costs for everyone involved. We are looking to fill a 56 passenger bus leaving from the Toronto area early morning of October 19/2010 returning October 20/2010. Anyone intested should post an interest or comment and we will go ahead in the planning stages and keep you updated as to how this can come together with a pricelist, email contact information, etc.......

 

I'm sure alot of stories, laughs and information can be shared along the way. Do keep in mind this will be approx. 10 hour bus ride each way. (trust me done it a few times and it's not all that bad) 1 night hotel in the Quebec City region. Costs will be put together pending the interest we have from MS'ers and their friends and families.

 

CCSVI in MS Toronto would like to thank you for your continuous support and remind all we're far from letting the idea of a simple angioplasty procedure go away. Making your voice heard might even make it to a front page or a 18:00 newscast near you.

 

The more people we can get together the closer liberation gets for so many people here at home.

 

 

 

 

Ceci est juste une enquête préliminaire pour voir s'il ya un intérêt dans la région de Toronto pour un voyage de montrer notre support pour nos amis dans la ville et Province de Québec.

 

Le 19  Octobre, 2010 à 13:00, il y aura un rassemblement sur le Parlement du Québec suivie d'une présentation personnelle à l'intérieur du parlement de nos amis du Québec. Il sera présenté personnellement par nos amis Francine Deshaies et Christopher Alkenbreck, qui se réunira avec la Minitere en santé du Québec. On peut tous montrer notre soutien en conduisant le 401 et le 20 EST pour les aider et montrer comment unis à travers ce grand pays du Canada les personnes souffrant de sclérose en plaques peut être unis à Québec.

 

Les plans sont encore en marche pour économiser les coûts pour tous les participants. Nous cherchons à louer un autobus de 56 passagers partez de la tot matinée du 19 Octobre/2010 de la région de Toronto retournez le soir du 20 Octobre/2010. Toute personnes interessées devrait afficher un intérêt ou un commentaire et nous irons avec le phase de planification et de vous tenir informé sur la façon dont cela peut se payer et réunir avec une liste de prix, des temps exactes, informations de contact e-mail, etc ...... vont etre déterminee si l'interet est la.

 

Je suis sûr que beaucoup d'histoires et de l'information peut être partagée le long du chemin. Gardez à l'esprit ce sera environ. 10 heures de autobus a faire. (Croyez-moi j'ai faites une dixaine de fois)CCSVI dans MS Toronto tiens à vous remercier pour votre soutien continue et rappeler à tous que nous sommes loin de laisser l'idée d'une simple procédure d'angioplastie s'en aller. Faire entendre votre voix pourrait même se rendre à une page de couverture de journeaux ou d'un bulletin de nouvelles d'ici pas longtemps.

 

S.V.P. excuser les fautes d'ecriture si il'y en a,

 

Merci

 

 

RASSEMBLEMENT IVCC - RALLY CCSVI

http://www.facebook.com/event.php?eid=155530277802055"

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A lesson from Mom: Don't be a 'good' patient

By Elizabeth Cohen, CNN Senior Medical Correspondent
September 30, 2010 -- Updated 1338 GMT (2138 HKT)
Elizabeth Cohen's mother, Sheila Schwartz, taught her that it's not always important to be a "good" patient.
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University of Maryland, School of Medicine, Institutional Review Board - My email, Contact these people by Maryland USA MS CCSVI Group

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par CCSVI in MS Toronto, dimanche 3 octobre 2010, à 02:12

 

Does the MS Society know anything about CCSVI? If they aren't clueless, then they have a serious case of wilful ignorance. Either way, they should be ashamed of themselves. This Q&A below was posted in the last few weeks.

 

After 3,000 safe angioplasty treatments around the globe, the Canadian MS Society is still trying to convince people that CCSVI may not even exist. 

 

More proof they no longer represent anyone with MS!

 

WaYnE

 

 

 

Daily Living with MS - 8/27/2010

 

Q: Doctors have been doing surgery on blocked arteries in the neck for years. I don't understand why there is controversy over operating on blocked veins in the neck, regardless of whether it is proven to help MS patients or not. If it does help MS patients, that's a bonus!

 

A: It is true that doctors have been doing surgery on arteries for years but it is an entirely different situation in the veins. The anatomy and architecture of the arteries is well known and the results well demonstrated by clinical trials. Much less is known about the veins and what is normal and what is abnormal. So there is no accepted criteria for what is abnormal in the veins. Also the best methods of studying the veins is also not known, so there are a lot of tests but studies now underway are determining what is the best way to show abnormalities. Stents are a way of operating on obstructed arteries which get smaller as they go on, so the stents can't get loose, but in the veins, which get bigger as they go on, the stents have been dangerous and are currently banned by many groups, although some centers in India and other places are doing them. 

 

The situation is more confusing than the media would suggest. Dr. Zamboni said all MS patients have obstructed veins, and none of the non-MS people had this, but the larger Buffalo study using his methods showed only half the MS patients had any neck vein problems and one in four normal people had some neck vein obstruction. In addition almost half the people with other neurological diseases had some vein problem in their neck, suggesting it was not specific to MS and may just be a widespread and common anomaly. A more recent study in England found few MS patients had any neck vein flow abnormality and concluded there was little to substantiate the idea of a neck vein problem as a basis for problems in MS. 

 

I realize this is very confusing to the person who wants to know what to do in this situation, but it shows the necessity to have well designed randomized controlled trials to get the real answers. Some of the studies are underway to see if neck vein abnormalities are really a specific problem in MS, and which test methods would be best to show the changes. A clinical trial for benefit to MS would take years and I realize that people are frustrated that such trials take so long but that is the best way to get real answers. 

 

I will give an example. Many years ago a therapy was seen to benefit 90% of patients with MS and so everyone wanted the therapy. (Dr. Zamboni got only one third (33%) of his patients showing improvement after 18 months). Why do a long trial in such a situation in which the excellent MS physician got 90%? In fact, this was the first randomized trial in MS and the result was that the therapy in the trial was shown to be no better than the placebo. 

 

The health care system is designed to provide any new therapy that is shown by convincing randomized trials to be beneficial, safe, and cost-effective. The neck vein surgery has not fulfilled any of these. People are rushing to a therapy that has not gone through any of the reasonable studies and standards that we expect in the health care system. 

 

You would never accept a drug for your child that was not subjected to careful randomized trials that showed benefit and safety. 

 

The health care system cannot afford to pay for therapies that have not passed through the accepted standards for benefit and safety. There are over 250 therapies on the internet claiming to be beneficial for MS, many of them claiming to cure the disease. The Zamboni theory is an interesting one and deserves respect as an idea and careful study to see where it fits in the management of MS. But there are standards for how we can assess what is true benefit, what is placebo effect, what is observational error. I realize that the frustration is the time it takes to carry out these studies, but they are necessary. 

 

We have had useless therapies in medicine that have lasted thousands of years because of belief, but inadequate study, and in MS we have had useless therapies applied for twenty years with enthusiasm because no one felt such great therapy needed questioning. 

 

There is a process. Next year we will hear of another dramatic therapy for MS. We don't accept them all. There is a process to assess whether they really make a difference. That is the process now underway to see what the neck vein therapy is all about and where it stands in the overall management of people with MS. 

 

Canadian MS Society:

http://www.msanswers.ca/QuestionView.aspx?L=2&QID=3515

 

 

CCSVI found in 97.1% of patients - EUROMEDIC

http://www.facebook.com/note.php?note_id=458239939918"

*RASSEMBLEMENT IVCC - RALLY CCSVI

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Clot in Stent- happen to anyone else?

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Stay the course.

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My experience

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CCSVI treatment---a lifetime commitment

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Would like to connect with others going to AZ Heart for the procedure--Posted by Dee

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Peeling Potatoes Again: The story of one Canadian's liberation at Hospital Angeles in Mexico

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Surgery for multiple sclerosis available at private clinic in UK

45-minute procedure similar to angioplasty is being offered at clinic in Edinburgh for £6,000

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MC Society - 2010 Research Grants

The multiple sclerosis surgery involves inserting a balloon to expand blood vessels
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Does the MS Society know anything about CCSVI? If they aren't clueless, then they have a serious case of wilful ignorance. Either way, they should
be ashamed of themselves. This Q&A below was posted in the last few
weeks.

After 3,000 safe angioplasty treatments around the globe, the Canadian MS Society is still trying to convince people that CCSVI may not even exist.

More proof they no longer represent anyone with MS!

WaYnE

Daily Living with MS - 8/27/2010

Q: Doctors have been doing surgery on blocked arteries in the neck for years. I don't understand why there is controversy over operating on
blocked veins in the neck, regardless of whether it is proven to help MS
patients or not. If it does help MS patients, that's a bonus!

A: It is true that doctors have been doing surgery on arteries for years but it is an entirely different situation in the veins. The anatomy and
architecture of the arteries is well known and the results well
demonstrated by clinical trials. Much less is known about the veins and
what is normal and what is abnormal. So there is no accepted criteria
for what is abnormal in the veins. Also the best methods of studying the
veins is also not known, so there are a lot of tests but studies now
underway are determining what is the best way to show abnormalities.
Stents are a way of operating on obstructed arteries which get smaller
as they go on, so the stents can't get loose, but in the veins, which
get bigger as they go on, the stents have been dangerous and are
currently banned by many groups, although some centers in India and
other places are doing them.

The situation is more confusing than the media would suggest. Dr. Zamboni said all MS patients have obstructed veins, and none of the non-MS people had this, but the
larger Buffalo study using his methods showed only half the MS patients
had any neck vein problems and one in four normal people had some neck
vein obstruction. In addition almost half the people with other
neurological diseases had some vein problem in their neck, suggesting it
was not specific to MS and may just be a widespread and common anomaly.
A more recent study in England found few MS patients had any neck vein
flow abnormality and concluded there was little to substantiate the idea
of a neck vein problem as a basis for problems in MS.

I realize this is very confusing to the person who wants to know what to do in this situation, but it shows the necessity to have well designed
randomized controlled trials to get the real answers. Some of the
studies are underway to see if neck vein abnormalities are really a
specific problem in MS, and which test methods would be best to show the
changes. A clinical trial for benefit to MS would take years and I
realize that people are frustrated that such trials take so long but
that is the best way to get real answers.

I will give an example. Many years ago a therapy was seen to benefit 90% of patients with MS and so everyone wanted the therapy. (Dr. Zamboni got only one
third (33%) of his patients showing improvement after 18 months). Why do
a long trial in such a situation in which the excellent MS physician
got 90%? In fact, this was the first randomized trial in MS and the
result was that the therapy in the trial was shown to be no better than
the placebo.

The health care system is designed to provide any new therapy that is shown by convincing randomized trials to be beneficial, safe, and cost-effective. The neck vein surgery has not
fulfilled any of these. People are rushing to a therapy that has not
gone through any of the reasonable studies and standards that we expect
in the health care system.

You would never accept a drug for your child that was not subjected to careful randomized trials that showed benefit and safety.

The health care system cannot afford to pay for therapies that have not passed through the accepted standards for benefit and safety. There are over 250 therapies on the
internet claiming to be beneficial for MS, many of them claiming to cure
the disease. The Zamboni theory is an interesting one and deserves
respect as an idea and careful study to see where it fits in the
management of MS. But there are standards for how we can assess what is
true benefit, what is placebo effect, what is observational error. I
realize that the frustration is the time it takes to carry out these
studies, but they are necessary.

We have had useless therapies in medicine that have lasted thousands of years because of belief, but inadequate study, and in MS we have had useless therapies
applied for twenty years with enthusiasm because no one felt such great
therapy needed questioning.

There is a process. Next year we will hear of another dramatic therapy for MS. We don't accept them all. There is a process to assess whether they really make a difference.
That is the process now underway to see what the neck vein therapy is
all about and where it stands in the overall management of people with
MS.

Canadian MS Society:

http://www.msanswers.ca/QuestionView.aspx?L=2&QID=3515

CCSVI found in 97.1% of patients - EUROMEDIC

http://www.facebook.com/note.php?note_id=458239939918


MS treatment block is discrimination

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My personal journey through CCSVI, and it's constantly changing!

*Journals should select drug advertisements more carefully

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MS & CCSVI

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going for test tues. sure hope they find something!!!!!

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