Barre google de traduction indispensable!
*Echos de murs: la guerre est toujours déclarée entre patients et leur assoce SEP, certains médecins, mais aussi entre médecins!
*CCSVI NORTHERN ALBERTA We had another great meeting tonight. The Edmonton CCSVI group has an executive and board members! Next step, join together with Alberta and Canada. We will win!!!
Carol Schumacher Dr Sandy McDonald on canada's wait and see attitude.
Anger greets decision not to fund MS treatment trials - CTV News
*Carol Schumacher Maxine is liberated!
Port Hawkesbury Reporter - LeBlanc-David recovering
*Ccsvi Transverse Myelitis This is one of the best videos I've seen on theories of what CAUSES MS (myelopathies in general as well) and CCSVI. Dr Andrews talks about the risks of MS meds vs treating CCSVI, the EQUIOPOISE of both treatments (learned a word today) and the statement of the society of Interventional Radiology regards CCSVI. This is ...the second video of the lecture. The first one is also fantastic. Enjoy! Rox
*CCSVI at UBC MS Clinic - Information and Support What will change after 2 years? The 7 studies curently funded are diagnostic studies ("does CCSVI exist?" "can we find it?"). They will do nothing to test the safety of the procedure, which the government claims is their biggest concern. ~Sandra
At least two years until MS trial | Canada | News | Toronto Sun
CCSVI at UBC MS Clinic - Information and Support Dr. Mehta in Albany, NY announces experimental study of CCSVI treatment. Two groups to get full balloon angioplasty treatment; one control ("sham") group to get venogram only. Open to RR and SP persons with MS only. Stenosis must be 50% or greater for treatment to proceed. See link for sign up details:
Study To Evaluate Treating Chronic Cerebrospinal Venous Insufficiency (CCSVI) in Multiple Sclerosis.
This is a single center, multispecialty, randomized double blind placebo control feasibility clinical trial. The purpose is to evaluate the safety, feasibility and efficacy of percutaneous transluminal angioplasty in treating extracranial venous obstructive lesions, and its influence on the clinica...
Dawn Carr I was just wondering if the people that have had the liberation treatment and had previously been on Avonex or other interferron drugs had to keep taking them after? I am getting the treatment done in mexico in just over one week and would like to know. Thanks
***Sur le site MS Canada:
Patrick Oleary Yves Savoire, the President of the MS Society said that most persons in Canada are waiting for more research before going for CCSVI treatment. Really Mr. Savoire? How do you know this? Has the MS Society conducted any research into even collecting a basic tally of how many of us with MS have gone or are going abroad f...or treatment? Has the MS Society funded any research whatsoever into the efficacy of the treatment for those going abroad? You have at your disposal thousands of potential participants in whom you don't seem to show even a modicum of interest. The MS Society is so desperately out of touch with those you are claiming to represent. I am personally ashamed that I spent time away from my sons to fund raise for the MS Society in the past. I didn't know any better. So many of us didn't know any better. So many of us know better now. Are you setting out to prove that stenosed veins are normal? I have to wonder by the selection and direction of your research.
Dawn Skinner Ted Warren has resigned as chairman of the St. John’s-Mount Pearl chapter of the MS Society of Canada.
"“I am writing to express my profound sense of disappointment with the MS Society of Canada's decision to oppose clinical trials of the so-called CCSVI therapy for treatment of multiple sclerosis. I believe this attemp......t to undermine the growing national consensus supporting the need for such large-scale trials does a serious disservice to the very group the society professes to serve, namely those who live each day with this condition,” Warren wrote to Yves Savoie, president of the MS Society of Canada."
Gord Gier Please stop playing games with our health! If I have blocked veins I want them found and fixed like any other Canadian if they don't have the MS label on them.
Anna Delorme They are feeding us and the public lies and contradictions. I guess you could call that a game. Honestly, at this point of the 'game' you're either with us or you're going to start looking pretty dumb on the world CCSVI stage.
Robert Kroeker Right now, available on the MS Society web page
dated August 13, 2010 is the following quote:
"Recommendation: That the Government of Canada commits $10 million to the budget of the Canadian Institutes of Health Research and earmarks it for research... into chronic cerebro-spinal venous insufficiency (CCSVI) and its relation to MS."
Yet on the advice of the MS Society at recent meetings the CIHR is offering no money.
Tessa Rushton CCSVI is a VASCULAR disease - if you don't want to make a connection to MS - stay out of decision making in regard to it!
Deb Knapp fix the veins to reap the benefits of improved bloodflow, if it helps with ms symptoms, then we have a win win situation
Maria Meszaros Dekleer I am so disgusted with you standing in our way of getting treatment for CCSVI!!!!!!!!!!!!!! SHAME ON YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Sandra Whitaker I am too Maria they no longer deserve anyones support they better find another disease to manipulate:(
Tessa Rushton CCSVI is a VASCULAR disease - if you don't want to make a connection to MS - stay out of decision making in regard to it!
Bill Stevens I WANT CCSVI. Please don't ban me.
Carol Prest Interventional Radiologists are willing to help MS patients Listen to part 2 of Dr. Andrews video
Carol Prest MS Neuro's are becoming more insignificant by the moment, wonder if the MS Society will jump ship from their love in with the Neuro's and cozy up to the IR's now,
Chrystal Gomes Carol, I really wish the MSSC would throw the neuros overboard and sail away with the IRs. I"m afraid they may choose to continue their relationship with neuros so they can work together at disproving CCSVI with their dubious studies, and still be able to keep their mistress Big Pharma on the side so they can enjoy her favours.
Francine Deshaies Tune into Connect with Mark Kelley tonight at 8:30 p.m. (Toronto time), as Christopher will be interviewed by Erica Johnson about his treatment in Poland and his reaction to the CIHR announcement that they will not fund pan-Canadian research into CCSVI clinical trials.http://www.cbc.ca/connect/
Anna Delorme Just wondering why can the MSSC run studies on CCSVI but they advise the CIHR NOT to do studies? Isn't that a contradiction?
Tessa Rushton I just wish they'd decide to follow Italy - CCSVI is one disease, MS is one disease - if there is a connection, the testing can be done in conjunction with treatment!
Patricia George Zwicker Thank you Ted Warren for resigning as chairman of the St. John’s-Mount Pearl chapter of the MS Society of Canada!!
Are you listening yet MS Society!! Hello? I hope this is just the beginning. I hope those who you rely on walk out and leave you stranded, then perhaps you'll know how your members feel.
"Ted Warren has resigned as chairman of the St. John’s-Mount Pearl
chapter of the MS Society of Canada over the national association’s
stand on a new, but controversial treatment."
Tessa Rushton f the MSS does not believe CCSVI is connected to MS, they should stay the hell out of the debate on whether to provide treatment to people dx'd with CCSVI!
Tessa Rushton CIHR - FORCING Canadians to opt for medical toursim
Anna Delorme http://watch.ctv.ca/news/latest/no-funding/#clip343029
Watch Dr. McDonald speak on Canada AM this morning. He speaks louder for us than anyone from the MS Society. I also read Mr. Savoie's comments in our local paper this morning and well. . . what a lousy way to start my day. BTW Mr. Savoie, yes, we are loud, sorry... you don't like that and one more thing. . . you DO studies in order to GAIN evidence. See how that works?
BEFORE I CONTINUE....I`M NOT, AND I STATE, I`M NOT BEING NEGATIVE....ONLY FACTUAL. WE ARE AFTER ALL ALLOWED TO STATE THE FACTS WITHOUT BEING ACCUSED OF BEING NEGATIVE....IS THAT O.K. WITH YOU, ABBY ?
Incredible how the Canadian government ca...n support a committee that was hijacked by the medical experts from the Canadian MS Society. Even more incredible is the fact that many of the Committee members were former or are presently members of the Medical Advisory Committee to the MS Society.
Even more incredible, when you look at the MS Society`s grant documents (all available online) since 2003, several of these "medical experts" benefited personally from large grants for their own research purposes. I won`t start naming names; you can do the research for yourself and find the full truth behind funding and grants allotted by the MS Society.
This is a MAJOR conflict of interest that we should never see in a charitable organisation. I`d really like to know who wrote the rule books and the code of ethics for charities.
On another note, kudos to Ted Warren, the former chapter president for the Newfoundland (St.John`s) chapter. He resigned following this announcement by the CIHR. http://www.cbc.ca/canada/newfoundland-labrador/story/2010/09/01/kennedy-ms-clinical-trials-901.html .
Judy Capstick-Keagan Chairman of the St. John’s-Mt. Pearl chapter of the MS-Society of Canada, Ted Warren, has tendered his resignation. What follows are excerpts from his resignation letter. I believe his words speak far better on this topic than mine ever could and anyone reading cannot help but be touched by the case he presents.
Web Talk - Newfoundland and Labrador
Web Talk, Newfoundland and Labrador, MS Society Head in NL Resigns, Society Refuses to Back Clinical Trials
Sandra Whitaker I've got to be free, free to face the life that's ahead of me:-)
Sandra Whitaker via CCSVI in MS Toronto : Think they've already bitten their nose to spite their face...idiots!!! They've now made our mission to ensure they FAIL!!
MS Society - Our Mission "FAIL"
Sandra Whitaker is sooo sick of life revolving around $$$, what happened to Canada?? How and when did so many idiots start controlling our lives?:(
*Christopher Alkenbrack Tune into Connect with Mark Kelley tonight at 8:30 p.m. (Toronto time), as I will be interviewed by Erica Johnson about my treatment in Poland and my reaction to the CIHR announcement that they will not fund pan-Canadian research into CCSVI clinical trials.
*Yvonne Andersen Just finished my 2 month follow up survey from my wonderful doctor who made me feel well again! I was ecstatic over the differences that I knew I had achieved while answering the questions. :-)
What a difference a day make's, feeling much better, no more blurry vision. YEAH.
*Patricia McDowell Kimball "Because of the advent of CCSVI, we now have an unprecedented situation of conflicting interests. What is in the best interests of persons with MS is clearly not in the best interests of both the neurologists who ...provide the scientific guidance for the MS societies and the staff of the societies who put into effect ...the policies of the neurologists."-CCSVI-33BRATS
*CCSVI - MS 33 B.R.A.T.S. I had my 2nd procedure Friday. Spent the weekend with my kids & resting, then came down with a nasty stomach bug. Getting sick, don't notice much still but warm toes. I was right, did miss May Thurner in 1st procedure. Didn't know, but had also restenosed. Still no stents. He adopted some techniques learned at symposi...um (left entry, multiple inflations & using balloon to find all).
Trevor Waite I just called TCMI, they have STOPPED SCANNING because of the huge over-load of MS patients wanting to be scanned!!! They no not yet know when they will start up again!
*Yvonne Andersen I think that all employees of the MS Society need to back down. We no longer and haven't for months wanted them to fight our fight. They do not have our best interests at heart and we are quite able to advocate with the government ourselves. The government needs to cut the MS Society OUT of the equation,start listen...ing to vascular surgeons as well as MS patients who have gone out of the country to have it done.
Yvonne Andersen Goosebumps and tears at the same time. Dr. McDonald is fantabulous!!!!! He did an excellent job on Canada AM just a few minutes ago!!! He's definitely our hero in all of this in Canada!
Yvonne Andersen If you have had the opportunity to be scanned in Barrie, ON at Dr. Sandy McDonalds office please go to this site and rate his office and the doctor himself. :-)
Just got home from Nettie`s fund raiser in Magrath, AB. She will be going to Poland in October! Great meeting you Nettie and all you family and friends!!!!
Ginger MacQueen I have a problem with folks, who do not live in Canada, critiquing how we are dealing with our dysfunctional government and MSS
Sheryl McDougald My message to Adrian Dix and his answer:
Hello Adrian, What
will BC do? I feel so angry... is the Canadian health system world
class or are we inept, incapable and controlled by greedy special
interest groups?? Why wasn't Doctor Sandy MacDonald included in the
...consultation? Why was the data from the US ignored? And where will BC stand? I am angry and embarrassed for my country.
I hope you can continue to fight for us,
Hi Sheryl, Absolutely.
This is a setback but McMorris has it right. The purpose of clinical
trials (which has the side benefit of allowing at least some patients –
probably quite a few – to stay in Canada for their initial treatment) is
to get to the information. No one is saying we have all the answers,
but we need urgency to get there. So we have to keep the pressure on…. This will give Mr. Falcon and others an “out” but it is not the last word. Adrian
Ginger MacQueen Even Kirsty thinks we should compare notes with our neuros before treatment and the Vascular surgeons after treatment!
Ginger MacQueen This letter
is the REALITY of what being a patient in CCSVI research can entail. I
signed up for this months ago.Thank
you for your application to the CTEVD research study being conducted by
the BNAC in Buffalo, NY. We have completed
...enrollment of MS patients who are female, aged 40-49.Thank your for your interest, patience and support for this
exciting new research.