Barre google de traduction indispensable!
September, 02, 2010
Members of parliament
Canadians in support of venoplasty for the treatment of Chronic cerebrospinal venous insufficiency (CCSVI) would like to invite all of you to our big bottle drive at the Parliament Buildings. There will also be a garage sale with donated new and used goods. Please bring your donations of quality used and new items. There will be beer and burgers for sale on the front lawn starting at 11:00 am until 11:00 pm. We will be selling 50/50 tickets all day the draw will be at 10:00 pm. There will be a few special guests appearing in the dunk tank; $5.00 for three throws. Please bring those cheque books we have to raise $ 1,110,000,000!!! 74.000 Canadians still need the venoplasty procedure.
This should cover the diagnostic testing, procedure, air fare and accommodations. There have been approximately 1000 Canadians that have gone for this procedure. This is why the total is $1,500,000 less. It is a big amount, but we have no choice as our government takes it direction from the Multiple Sclerosis Society of Canada (MSSC) and the Canadian Institutes of Health Research (CIHR). How can Canadians with the label MS get treated for CCSVI with out leaving our country? Publicly funded agencies that have other invested interests are making the recommendations to our government on how to proceed with CCSVI.
The members of the CIHR need to be investigated for a conflict of interest into the study of CCSVI. Why would they choose to study this when their pharmaceutical and research funding could dry up with the proposition of CCSVI?
My wife and thousands of Canadians are being denied their basic right to health care.
People with the label of Multiple Sclerosis have been refused treatment to correct the flow of blood in the veins draining the central nervous system.
Mr. Prime Minister, Stephen Harper
Health Minister, Leona Aglukkaq
I expect a Response to this letter.
Premier Gordon Campbell and Mr Kevin Falcon you have not shown you’re stance yet.
Fix this problem please
People with the label of Multiple Sclerosis have been refused treatment to correct the flow of blood in the veins draining the central nervous system."
Christine Engelhardt spent thousands of dollars on controversial MS treatment in Costa Rica.
Updated: Wed Sep. 01 2010 16:56:35
A Stony Plain nurse is back home after receiving a controversial new treatment for multiple sclerosis in Costa Rica.
Christine Engelhardt has been living with MS for 10 years. She says one of her first symptoms was blindness in her left eye.
Engelhardt is now one of many MS sufferers who've chosen to travel out of the country to receive the liberation treatment, which involves the widening of the veins.
The procedure is based on research from an Italian doctor who found blocked veins in some MS patients could be reversed by a procedure similar to balloon angioplasty. Several countries are offering the treatment and have reported successful results but it is still not available in Canada.
Engelhardt spent $20,000 to obtain the treatment in Costa Rica. She says two weeks ago she couldn't pour coffee without spilling because her hands had no strength. Her symptoms also included headaches, loss of balance, and severe muscle spasms.
"My fatigue was insane. I couldn't make it through a whole day," she said.
She says after undergoing the treatment in Central America, she felt instant change.
"When I first woke up from the anesthesia I could feel my left foot, which I haven't been able to feel for about two years."
Engelhardt says she is disappointed the treatment hasn't been approved in Canada.
"I just wish everyone had this opportunity to feel better because we deserve it...we deserve the choice."
On Wednesday, officials announced the federal government would not fund clinical trials in Canada.
"There's no evidence that venous insufficiency is linked in any way to multiple sclerosis," said Dr. Alain Beaudet with the Canadian Institute of Health Research.
Health Minister Leona Aglukkaq said the federal government will assemble a working group to study data from seven studies of the treatment, which are now underway.
"To ensure that we have the evidence to support this procedure, we need to do the research," Aglukkaq said. "And once we have that, we will proceed -- if there is enough evidence from the seven research projects already underway around this subject -- we will proceed with pan-Canadian clinical trials. We will support that. At this point in time, we do not have the evidence to proceed."
Aglukkaq said the studies are expected to take two years to complete.
With files from Susan Amerongen and CTV.ca News Staff""
Newmarket native champions controversial procedure
For her, feeling pain was a good thing
*J'ai réussi à me réinscrire sur MS Canada hihi!
Multiple Sclerosis Society of Canada
Conrad Greer Yves Savoie, it is time to drop every scientific advisor you have that is not honestly and openly seeking to exploit and expand this discovery. If you don't do it now, your organization will be toast. We are not in the old days when what the medicine man says is the final word. Communication networks are too good fo...r that, the truth will surface. Studies are being done, (not the ones you funded) and how good or what the limitations of CCSVI treatment will be known, and it will be positive. You are now at the 10 month point in your defensive struggle to dismiss and distort the CCSVI discovery. As I am sure you know if you look with your eyes open, you are fighting a losing battle because there is value in CCSVI treatment. It is not a hoax nor is it snake oil. Playing the delay, discredit and distort game laced with fear mongering will only cause death and suffering for those who have to wait longer than they might otherwise needed for the truth to reign.
Conrad Greer MSSC you should be ashamed of yourselves. You are hiding behind the rules of scientific discussion to protect the status quo. There is much to learn about CCSVI, its relationship to MS and particularly the outcomes of treatment. Using the fact that there are many unknowns to prevent rapid study of CCSVI is unconscio...nable. What we do know now is that there is something to this discovery, that it is beneficial to many people that have MS. We know this from peer reviewed studies and over 1000 anecdotal treatment accounts. It is clearly not an organized hoax. It is clearly not the foggy dreams of pain ridden people seeking hope. Too many people know too many real people who have made remarkable progress after treatment. Scientific protocol must be followed but what the MSSC is so far standing for is the delay of science, the avoiding of truth, and sanctioning of suffering in the name of risk management.
Jenny Boroj Just in case this hasn't already been posted, Albany is recruiting participants for their clinical trial.
Lorin Powell BIG BOTTLE DRIVE ON PARLIAMENT HILL
- Rédiger un commentaire...
Christopher Alkenbrack Rob: I have a very important question for you. I`ve spent the last hour or so going through the Grant Documents from 2003-2009, and I find it curious that 11 out of 13 members of the Medical Advisory Committee have received millions of dollars in grants over the years. And many members of this very same committee were ...on the panel of "Experts" that made recommendations to the CIHR NOT to fund clinical trials of CCSVI.
Is this not a clear CONFLICT OF INTEREST on the part of the MS Society of Canada ? Examples to follow.....
- Rédiger un commentaire...
Anna Delorme "The Multiple Sclerosis Society of Canada has similarly been cautious about the new approach, saying a lot more research is needed."
Again, MSSC, I'm trying to understand where the logic in all this is! You say more research is needed yet you advise CIHR to not fund trials. You say there's not enough evidence but that...'s the purpose of studies. . .to gain evidence. You don't like the studies that have already been done but you advised CIHR to not fund trials. Why is the MSSC doing diagnostic studies (that are a joke) yet you advise CIHR NOT to conduct studies?? Alain Beaudet said at the Neurological Subcommittee that he was waiting for and wanting proposals for studies. What happened??? Peer pressure?
- Rédiger un commentaire...
Donna DeLorme Who is on the MS Society of Canada's medical advisory panel?? No wonder they're against CCSVI treatment! http://www.facebook.com/note.php?note_id =429753527210
- Nicole Humphries aime ça.
- Rédiger un commentaire...
Anna Delorme Again, let me help the MSSC with their "research". . I had yet ANOTHER friend treated today and they found lots of blockages. Do we see a trend here yet??? Are you not embarrassed that so many of us are doing television and radio interviews and we keep getting asked why, why???
MS therapy trial needed: Edmontonians
Last Updated: Thursday, September 2, 2010 | 8:48 AM MT Comments7Recommend8
Jason Kaye of Edmonton spent more than $10,000 to have the liberation therapy procedure done in Poland in June. (CBC)
Read more: http://www.cbc.ca/canada/edmonton/story/2010/09/02/edmonton-multiple-sclerosis-treatment-reaction.html#ixzz0ySNlQNQj