Researcher cautions trial for MS ‘liberation’ therapy years away
Saskatoon researcher Dr. Katherine Knox urged multiple sclerosis patients to have patience Wednesday, as a clinical trial of the so-called “liberation treatment” is years down the road, despite promised funding from the Saskatchewan government.
The biggest difficulty her team faces, she said, is that they don’t know how to test patients to see if they have the blocked veins which, according to the theory behind liberation treatment, are linked to the disease.
“The problem is that at the present time, we do not know how to accurately and reliably define venous abnormalities that may or may not be related to MS,” said Knox, who is the director of Saskatoon’s MS Clinic and the Cameco MS Neuroscience Research Centre, a research unit of the University of Saskatchewan.
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Multiple sclerosis theory dealt a blow by studies – Los Angeles Times
Now research published online in the Annals of Neurology undermines the theory — called chronic cerebrospinal venous insufficiency by its creator, Italian researcher Paolo Zamboni.
In one study, conducted by German scientists, ultrasound imaging tests of the veins around the brains and nervous systems of 56 multiple sclerosis patients found that blood flow was normal in all but one person. A control group of 20 healthy patients had similar blood flow.
The second study, conducted in Sweden, used a different type of imaging test to compare blood flow in MS patients and a group of healthy people; both had similar amounts of blood vessel blockage.
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Saskatchewan’s Wall vows to fund contentious MS treatment – The Globe and Mail
In a striking departure from his political counterparts across the country, Saskatchewan Premier Brad Wall says his government will finance clinical trials of liberation therapy, a contentious experimental procedure for multiple sclerosis patients.
“There isn’t unanimity on the issue, I understand that,” Mr. Wall said on Tuesday. “But … the province of Saskatchewan is willing to play a funding role.”
The move shunts Saskatchewan to the forefront of Canadian efforts to introduce a treatment that has researchers, politicians and the MS community divided over the roots of the mysterious nerve-wasting disease and the pace of Canadian medical research.
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Talking about From M.S. Patients, Outcry for Unproved Treatment – NYTimes.com
The new theory has taken off on the Internet, inspiring hope among patients, interest from some researchers and scorn from others. Supporters consider it an outside-the-box idea that could transform the treatment of the disease. Critics call it an outlandish notion that will probably waste time and money, and may harm patients.
These critics warn that multiple sclerosis has unpredictable attacks and remissions that make it devilishly hard to know whether treatments are working — leaving patients vulnerable to purported “cures” that do not work.
The controversy has exposed the deep frustration of many people with this incurable, disabling disease, who feel that research has let them down. It is a case study in the power of the Internet to inform and unite angry patients—which may be a double-edged sword. Pressure from activists helped persuade the Multiple Sclerosis Society to pay for studies of Dr. Zamboni’s theory, but the Internet buzz has also created an avid market for a therapy that is still unproved.
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Talking about Proceed with caution on new MS treatment: Canada’s top medical journal – The Globe and Mail
“There are a lot of people out there that have illnesses that are difficult to treat, impossible to cure,” Paul Hébert, editor-in-chief of the journal and co-author of the editorial, said in an interview. “The difficulty we now have is picking priorities.”
Bowing to pressure to allow widespread public access to the procedure before it’s been proven safe and effective in rigorous scientific trials could endanger patients and also create an expectation for a similar response each time a promising new treatment or procedure emerges, the editorial says.
At the same time, it’s unfair to completely block all patients from receiving the treatment they want, it says.
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Talking about CTV British Columbia – MS patients claim discrimination in treatment access – CTV News
Friends Rick Pereira and Martin Dimitov both suffer from MS. Every day, Pereira visits a Burnaby care home to help Dimitov.
Though both were diagnosed at the same time, Dimitov’s symptoms are so advanced, his vision is eroding daily. The former semi-professional soccer player can’t sort out his vitamins without assistance.
Many MS patients believe that a simple vascular procedure can ease and even eradicate the debilitating effects of MS.
Dimitov and Pereira both say that the so-called “liberation” or “zamboni” treatment is like pulling a drowning person out of the ocean.
“Because it treats the cause, it would definitely help. All the evidence is showing that everybody who has had this done has been helped in one way or another,” Pereira told CTV News.
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Talking about Liberals seek MS debate – The Globe and Mail
Toronto MP Kirsty Duncan is leading the charge, pressing Health Minister Leona Aglukkaq call a meeting of provincial health ministers to develop a plan that would allow all Canadians with MS to have access to the procedure. She also wants the federal government to provide $10-million to Multiple Sclerosis Society of Canada for research into a new hypothesis about the causes and treatment of MS.
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Talking about Procedure could result in rebuke for radiologist
A Victoria radiologist is facing possible professional rebuke for performing an experimental procedure said to cure the effects of multiple sclerosis.
Dr. Brian Weinerman, an oncologist and executive medical director of diagnostics for the Vancouver Island Health Authority, said he has spoken to the radiologist — who is now feeling a little chastened — and passed along a report on the matter.
The radiologist “was a little naive and he knows now what he did was beyond the bounds,” said Weinerman.
Last month, two people from Vancouver, both with multiple sclerosis, received a treatment at Victoria General Hospital in which veins draining blood from their brains were unblocked using balloon angioplasty.
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Talking about Protesters rally for access to MS treatment
OTTAWA — A fast, easy cure for multiple sclerosis has been found, but Canadian health officials won’t let MS victims have it, protesters said Wednesday on Parliament Hill.
About 200 people, many in wheelchairs, called on the federal government to get behind a new treatment they believe can cure the degenerative disease.
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