IVCC/CCSVI, articles, liens et échos de murs de ce lundi.

Publié le par Handi@dy

Barre google de traduction indispensable! Pas de vidéos hier, c'est comme ça!

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Don’t be a good patient, be a good advocate.

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Vast majority of Multiple Sclerosis patients report excellent results after CCSVI Liberation Treatment in India

CCSVI Screening and Liberation Treatment for Multiple Sclerosis

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Novartis Unveils MS Drug Pricing

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In Parkinson's Disease, Brain Cells Abandon Mitochondria

 *Minocycline likely to be highly effective in MS despite poor study design

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 My Note to the MS Society

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COSTA RICA CCSVI Treatment treated through Passport Medical

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A father fights to give MS patients a chance

Daughter confined to wheelchair
Section: 
News

By Eric Howald

 

 

Harvey McLeod of Kincardine has one goal in life – to help his daughter.

 

Connie Prosser, 50, is wheelchair bound in a nursing home in Athabasca, Alberta. She’s been there for three years.

 

Two years ago, the 77-year-old McLeod started a quest to get an operation for his daughter that could improve her life.

 

 

Harvey McLeod

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Corner Brook man heading to Bulgaria for MS ‘Liberation Treatment’

Don Morey is getting ready to go to Sofia, Bulgaria to get the Liberation Treatment done for his multiple sclerosis. The province won’t pay for him to have the procedure done, so he has to raise money to get it done. Cliff Wells

Don Morey is getting ready to go to Sofia, Bulgaria to get the Liberation Treatment done for his multiple sclerosis. The province won’t pay for him to have the procedure done, so he has to raise money to get it done.

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Phlébographie

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Letters to MS Society and MS Doctors Inviting Them to Participate in a CCSVI Fact-Finding Mission.

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Angioplasty and Vascular Stenting

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CIHR announcement on CCSVI and MS

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*Echos de murs:

*CCSVI at UBC MS Clinic - Information and Support  Is your neurologist CCSVI-friendly or at least CCSVI-curious? If the answer is YES, comment here or, if you prefer, send me (Sandra Birrell) an email at ccsviBC@gmail.com. I am looking to see how much hidden support we have built up these past 11 months. Thanks!

*Michelle Walsh
I am saying THANKS for our Canadian Thanksgiving this weekend to Professor Grozdinski, Dr Mariana Illoksa and Dr Konteva in Bulgaria at Tokuda Hospital who saved my life this year and given me back such quality of life with proper blood flowing in my body now:-) The whole team in SOFIA at Tokuda Hospital are the BEST and I owe them my life:-)


*Yvonne Andersen  This is the mission statement for Hospice Nova Scotia:
Yvonne Andersen  Our Mission is to achieve comfort and peace for persons living and dying with a life threatening illness throughout Nova Scotia. The Association exists to promote the philosophy and principles of palliative care through networking, public and professional education, advocacy and research.
Michelle Walsh  via CCSVI in Multiple Sclerosis : Here is the Hubbard Foundation CCSVI multi-center registry. Check often, more sites are close to approval.
CCSVI Multi-center Locations | The Hubbard Foundation, San Diego CA
www.hubbardfoundation.org

*Multiple Sclerosis Society of Canada  Greetings all, The recently established CCSVI working group held its first meeting on Monday September 20 2010. Information about the working group and a summary of the meeting can be found on our website http://bit.ly/cY3C3i. Thanks, -Rob
Roy Bertola Way too SLOW...People with MS don't have that kind of time.. And those who went else where to have it done should be reimbursed.
Daniel Steen Roy how right you are. Why can't our system that is paid for by us reimburse those who have come out of pocket to increase their quality of life. I guess If ms society did their job 5 yrs ago we wouldn't be in this position.
Jaime Michaels thnk you. Interesting group of people gathered for this group incl ms liberation and a few well known ccsvi supporters. That's the way it should be. thanks for the info. You still have my support.
Maria Meszaros Dekleer It seems Diana Gordon is in this group and that is a GOOD THING! and Shelley Black !
Lori Varrin Kidwell Thank you for having MY best interests at heart and taking the time to see if this procedure is safe.
Don't want to see one more death from MS treatment that wasn't investigated long enough or hard enough.
Debi Funk So glad they are studying this!!!! I agree with Lori wholeheartedly!! My kids were out for the canvas this year and we'll do all we can to support!! :)
Dianna Newbury  Sorry Rob - but I do not trust the MSS anymore. As I have said previously, too little - too late. However, I am happy to note that Diana Gordon and Shelley Black are participants within this group.
Rob Frykas I've been quite critical of the ms society in the past on how they have handled this whole ccsvi situation. I will admit that this is a positive step. What comes of it will waite to be seen.
Jai Roberts Lip service. Nothing more. By the way Rob, who are the high ranking people within the MSSC who have had the liberation procedure done?
Want some credibility and respect? Come clean. VERY clean.
Jai Roberts
‎@Jaime: If, as CCSVI Toronto alleges, there are high ranking people within the MSSC who are getting liberation treatment, representing an organization that has done everything it can to sweep CCSVI under the rug, then they have a CLEAR con...flict of interest. And THAT needs to be exposed for all to see. The names don't really matter... the fact that it is happening is the smoking gun.

In my mind, the MSSC can do one of two things: be upfront about things, or have W5 (or some other investigative program) blow the roof off of headquarters in Toronto. One or the other will eventually have to happen. And heads will likely roll either way... the only question is will the MSSC survive the damage.
Wendy Ireland  Aaargh! How many deaths from Tysabri? A dozen? More? One single person is allergic to the bloodthinners after a CCSVI procedure and we don't hear the end of it! Get your facts straight before you deny dying people a bit of life - people with no other options!!!!!!!!!!!!! So easy to say we need proof when you're RRMS or slowly progressing. How about if you're on your deathbed? Would you change your mind then?
Chrystal Gomes
Wendy, notice how the defenders of the MSSC always quote incorrect CCSVI information as fact??? I cannot believe that those with this illness would not be interested in learning the truth for their own health's sake. How many times has thi...s wrong info been corrected?

There is also continued conflict of interest reflected in the pro-MSSC comments and "liking" by Board of Directors Members and MSSC staff, yet again.
Carol Prest
So this Committee will meet three times a year, is this suppose to pacify us for the next two years while we wait for the imagaing studies to be complete. (have yet to confirm that any of the four have even started) The decision from CIHR o...f which the MSSC all voted to reject funding after they previoulsy promised to advoate for te $10 m to fund Clinical trials for CCSVI. This surprising decision is responsible for further stalling any chance of Clinical trials even starting in Canada until late 2012. What prompted or influenced this sudden change in direction (Please provide the truth)

Is the MSSC mandate to base their decision only on the MSSC funded imaging study, or will they acknowledge the many studies that have already taken place outside of Canada. (like Poland, Kuwait, Bulgaria and Dr. Sandy McDonalds testing results done in Canada) Will the MSSC support Direct-MS's offer to send the Canadian grant recipients for proper training and education about CCSVI?

Why was Jock Murray appointed to this council, he has publically mislead people on the facts of CCSVI testing and treatment in the past and has never publically acknowledge these errors. Have any of these medical experts on this new committee had any contact with the many doctors involved with CCSVI testing and treatment to better inform themselves of the current data? Do any of these doctors have any direct experieince with CCSVI, if so please disclose.

Will the MSSC in good faith truthfully answer the many questions that have been posted to them in the past that have been intentionally ignored, when and who will answer them.

It is not acceptable to suggest that we wipe the slate clean on a go forward basis with out acknowledgement and taking accountability for the information errors, fear tactics and conflict of interest within this society that are determining what treatments will be made availble or even talked about. The Executive has failed in their mission values. I personally would like a response from the MSSC to these questions before any credibility or trust can be considered. Respect and trust is to be earned, and based on your lastest decision to block all posting and total disregard to the comments that followed does not support the intentions of this postive spin.

Abby Kennedy
Jai, seriously, do you think that anyone who decides to get any (let alone an unproven) procedure done for their MS is required to tell their employer?? It's none of anybody's business if someone decides to get liberation therapy, but their... own. If this is even true, they can still work at the MSSC if they want to and still support the organization and not want to personally wait for the research to get it done. I support the MSSC and the only responsible position that they can have- wait for the research to go ahead. But I'm still looking at the CCSVI option.

Let me get this straight-- what you wanted them to do was just say, OK everybody go get CCSVI and tell the gov't to do it. Right?

So, let's say they did just that and the medical review boards of hospitals don't approve the trials or treatment yet, because of a lack of credible scientific evidence. You'd still be happy with them right?

OK let's just move this scenario down the road 2 years. . . so let's say the science doesn't bare out that this is the cure or cause of MS, but it helps 25 % of people for 18 months with RRMS, but the MS Society endorsed it and said - yeah it's safe we believe in it-. Go ahead and travel to Poland or India and spend your hard earned money or mortgage your house or whatever we support this idea.

What then hypothetically speaking . . . what if you're in the 50-75% of people that CCSVI didn't work for last for you, but you paid $20,000 and travelled to India? Wouldn't you blame the MSSC for telling you to waste your money and getting your hopes up?
That would be a lawsuit waiting to happen!

No matter what the MSSC says or provincial gov't say either way- this is not going to get past Hospital medical ethics review boards in Canada until there is more evidence.But if MSSC support it without knowing for sure that it works, they are doing a huge disservice to all of those left behind waiting for the real cure, or new treatments that might help them.

You'd all be screaming bloody murder if CCSVI treatment turns out to not be effective or lasting or placebo effect. Or maybe very likely to only be able to be performed a few times becaue the veins will collapse anyway over time and you can't keep doing the same procedure in the same spot safely. Ask someone on dialysis what happens to your veins after repeated intervention.

Some of the questions here are absolutely ridiculous. Do you think they really should respond to such obviously absurd allegations? You're not the boss of them. Go volunteer, get on a committee if you want to find out what's really happening at the MSSC. Talk to the people that work there- they'll tell you. Don't expect them to post people's confidential information on this public page.

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