IVCC/CCSVI, liens et articles de ce vendredi.

Publié le par Handi@dy

Barre google de traduction indispensable!

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Annual Reports and Financial Statements (profits de l'assoce américaine contre la SEP!!!)

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MS treatment trials: let's not rush to follow Saskatchewan's example

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MS liberation: the trial I’d like to see

par CCSVI in MS Toronto, jeudi 12 août 2010, à 17:21

Alberta Health Services, the centralized corporate behemoth that runs the province’s healthcare system, disappointed advocates of “liberation therapy” for multiple sclerosis last week by putting out an amazing discussion paper [PDF] surveying the relationship between MS and “chronic cerebrospinal venous insufficiency”. It summarizes clinical knowledge in an accessible way and raises points that even CCSVI skeptics have overlooked. One simple example: “If proven, the association between MS and CCSVI may actually be explained by MS causing CCSVI.”

 

Given the logical and empirical problems with Dr. Paolo Zamboni’s theory and the special risks of venous angioplasty and stent insertion, Alberta politicians can feel comfortable in taking a hands-off attitude toward Saskatchewan Premier Brad Wall’s aggressive push for more trials of liberation therapy. If members of the Stelmach cabinet still want to pay for some risk-free research, though, I have a completely serious suggestion: why don’t we test Zamboni himself? We could do it live on cable TV. Actually, since CTV’s flagship W5 program (with synergistic assistance from the Globe & Mail) played such a large role in creating the furore over Dr. Zamboni’s theories, it’s possible the network would like first crack at the broadcast rights.

 

Zamboni claims to be able to tell MS sufferers apart from healthy individuals with virtually perfect accuracy just by looking at suitable medical images of the neck veins. There is no reason why the world should settle for his mere assurance that he can do so, since this ability ought to be simple to prove. And if he can do it he has no reason to be afraid to demonstrate it. It does not make much sense for the world to perform countless multi-million-dollar trials of his treatment before we check out the most basic, inexpensively verifiable element of his claims. (It certainly does not make sense to let people buy MRIs and other scans for “venous insufficiency” until we know whether that phrase has any practical meaning.)

 

So why not let Dr. Zamboni declare what images he requires, take 50 sets of snapshots of MS patients and 50 sets from healthy controls, and let him have at the pile of 100 file folders? Invite him to Alberta. Pay his expenses. Give him as much time as he needs. Have clinicians (and, preferably, some conjurors) present to establish proper, bulletproof double-blinding. The cost would probably come in at well under $100,000 and we would have our result instantly. Either he identifies the MS patients at a rate much better than chance or he doesn’t. If he scores close to 100%, as he has implied he can, then we would have strong reason to believe that vein structures are associated with MS. And we could justifiably move on toward establishing the proper direction of the causal arrow that those crotchety killjoys at AHS are so concerned with.

 

by Colby Cosh on Wednesday August 11 2010

 

 

MS liberation: the trial I’d like to see:

http://www2.macleans.ca/2010/08/11/ms-liberation-the-trial-id-like-to-see/"

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Conflicts of interest at the Annals of Neurology---A Request from the CCSVI in MS Community

par CCSVI in Multiple Sclerosis, jeudi 12 août 2010, à 18:54

QUOTE FROM THE EDITORS of THE ANNALS OF NEUROLOGY on CONFLICTS OF INTEREST:

 

Managing Conflicting Interests in Medical Journal Publishing By Adam F. Stewart, S. Claiborne Johnston, M.D., Ph.D., and Stephen L. Hauser, M.D. December 17, 2008

 

http://www.dana.org/news/cerebrum/detail.aspx?id=14230

 

"As editors, our most inviolable charge is to ensure that the content of our journal is of the highest possible quality, that we always operate in the public’s best interest, and that we never give readers cause to question our independence. Conflicts of interest can appear in many forms, both obvious and subtle. Only by recognizing that conflicts of interest will always exist, that human beings are fallible, and that scientific inquiry is never free from potential bias can we make certain that such conflicts are recognized and managed in a consistent manner and under the full light of disclosure."

 

 

RESPONSE:

 

 

Dear Dr. Hauser,  Editor of the Annals of Neurology--

 

Your publication has rather quickly published two studies which claim to replicate the research of Dr. Paolo Zamboni and his discovery of CCSVI.  Both studies rendered negative results and received much coverage in the lay press.  Yet neither research group contacted Dr. Zamboni regarding his specific testing protocol, nor attempted to utilize the same procedural process in diagnosing CCSVI.  The scanning methods and diagnostic criteria employed were different.

 

We question your independence.

 

As interested parties-- those actually suffering from MS and the caretakers who love them-- we demand that you immediately 

1. PUBLISH some of the many the rebuttals which have been submitted to your journal on the Sundstrom and Doepp studies.

2. DISCLOSE your personal bias towards maintaining MS as an immunological disease.  

3. INVITE vascular doctors to publish their findings regarding the correlation of CCSVI and MS.

4. WORK with the hundreds of doctors that are identifying CCSVI in MS patients around the globe.

 

Only with this transparency can you prove to the world that you are indeed free from bias.  We await your response.

 

signed,

CCSVI in MS"

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MLA Cecil Clarke's Email To Me

par Judy Capstick-Keagan, mercredi 11 août 2010, à 19:04

This is an email I received today from our MLA Cecil Clarke. I had a very pleasant conversation with him last week, he really cares about people and he is helping with this battle to have the angioplasty procedure approved for MS'ers in Nova Scotia. He is to be commended for his diligence in this matter so thank-you Mr. Clarke on behalf of myself & my family.

 

 

 

 

 

 

Dear Judy:

 

Further to your e-mail and office visit, rest assured that the PC caucus remains steadfast in our support for MS treatment in province. As indicatedby MLA Alfie MacLeod's personal experience and advocacy as recently as lastweek, our caucus will not give up on a treatment even if it isn't a cure according to various authorities

I look forward to attending the upcoming fundraiser and will of course make a personal contribution then. I regret the current government has restricted my ability to assist in a greater way.

You are to be commended for your strength, drive and unfettering commitment to Cecil and access to treatment.

 

Warm personal regards,

 

Cecil

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par CCSVI in MS Toronto, jeudi 12 août 2010, à 18:27

Neil Pierce, President of Alberta-North West Territories division for MS Canada told the Globe that he would like to see clinical trials and screening for CCSVI held in Canada, and that later this month, our country may be one step closer to achieving that.

 

"People come back and have success stories of this treatment," said Pierce.

 

"We can't ignore personal experiences. (However) people shouldn't be putting all their eggs in one basket and there should be a focus on continuing to put money into research. This doesn't look to be the cure for MS, but a treatment option."

 

In August, a meeting is scheduled with the Canadian Institution of Health Research and world experts to discuss CCSVI and if there is enough evidence to progress to clinical trials in Canada. "If all parties agree, this could be what brings clinical trials to Canada," said Pierce. " Until then, Pierce said he understands patients needs to seek attention for their MS quickly.

 

He encourages anyone thinking of travelling out-of-country for surgery to consult with their doctors and neurologists first about risks and procedures."

The Psychological Impact of Multiple Sclerosis

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Daughter's bracelets offer hope

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Multiple Sclerosis - Your Own Private Hiroshima

 

*Forum on Health



*SEP et traitement anti hypertenseur, ça confirme la théorie veineuse!!!

Treating Multiple Sclerosis With Antihypertensive Drug

*How About an Evidence-Based CCSVI Debate?

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Clinic to screen for MS treatment

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Where is the best testing and IR???

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Tisa's MS Liberation Experience

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Dr. Simka letter- Most likely, MS = CCSVI + some (probably more than one) other factors...

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Hospital Angeles TIjuana: CCSVI Webinar, Q&A w/ the Medical Team

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Ruth Ann Marrie Discusses Vascular Comorbidity and Rapid Disability Progression in MS

*Local KW MS Society Gets Creative Fundraising With Freedom Ride

Commenter cet article

jean-philippe 14/08/2010 01:20



merci de ta réponse Adrienne ! je comprends fort bien que tu n'es pas le temps ! je te souhaite un beau week end !



Handi@dy 15/08/2010 09:38



Surtout pas la santé! Autrefois j'allais sur un vingtaine de blogs auxquels j'étais abonnée, aujourd'hui 5 ou 6 mais rarement, un seul blog de non
SEPien! :0010:



jean-philippe 13/08/2010 22:29



bonsoir Adrienne ! ton blog est toujours aussi riche en informations ! je te félicite ! bon courage pour ce noble combat ! j'éspère que tu te portes au mieux !


 


PS: je serais content que tu passes sur mon blog ou sur ma page Facebook !



Handi@dy 13/08/2010 23:35



Merci Jean-Philippe! La ccsvi me demande un travail énorme et prend un temps que je ne compte plus. Je passe sur ta page face quand il y a du neuf. Pour le
blog, j'avoue ne pas avoir le temps, désolée, c'est trop difficile pour moi! :0010:



tiot le chti 13/08/2010 10:33



salut


je te souhaite un bon week end du 15 août



Handi@dy 13/08/2010 23:32



Merci Tiot! Excellent week end à toi aussi! :0010: