MS under observationThe Beacon
Published on April 28, 2011
Stephanie Stein
Many people with Multiple Sclerosis (MS), including Sandy Collins of Wareham, are waiting to hear whether liberation treatment is worthy of a place in the medical community. As reported last week in the April 7 edition of the The Beacon, 41-year-old Ms. Collins has chronic MS, and cannot function without the help of her caretaker, Ann Mathews, and mother, Blanche Dyke. Since her liberation treatment in India last year, Ms. Collins still waits for follow-up physiotherapy, which can encourage new blood flow in stagnant areas of her body. If her physiotherapy is prolonged, her condition is not likely to improve.
Liberation therapy, also referred to as chronic cerebrospinal venous insufficiency treatment (CCSVI), was pioneered by Italian surgeon Paolo Zamboni.
A balloon angioplasty is used to widen a vein in the neck, which is thought to relieve a buildup of iron in the brain. Many Canadians have been travelling abroad to have it performed.
With the approval of provincial health minister Jerome Kennedy, the liberation treatment has been put under an observation study in St. John’s, Newfoundland to determine its credibility.
It was a conversation with St. John’s lawyer, Michael Duffy, whose own MS symptoms significantly decreased after he underwent, liberation therapy, that convinced Mr. Kennedy to ask neurologists whether something could be gained by examining people who have had the treatment.
Most people know of someone who has MS, including Mr. Kennedy, who has been determined to get to the bottom of the disease.
“Everyone knows someone who has this disease,” said Mr. Duffy.
Even Mr. Duffy, reputed as being a cynic amongst friends, can no longer ignore the overwhelming evidence that the liberation treatment works.
“Last year this time, I was 32 pounds heavier. I couldn’t walk 60 metres unassisted, without my cane. No clarity of thought. No energy. I wanted to sleep all the time. It was terrible.”
Since his liberation treatment last summer, Mr. Duffy said he feels like a new man.
“Now I don’t ever use the cane, and the muscles that had atrophied have grown back. My energy levels are better than they have been in 20 years, so for me it’s really something.”
Currently, about 50 patients have been enrolled in the study in St. John’s. Dr. Price Phillips is testing the patients, and Dr. Mark Stefanelli will be caring for them. This is what is known as a double-blind study, in which 40 subjects are having surgery, and 10 are not, but neither the patients nor the doctor know what treatment the patients are getting. The observation study will soon determine whether there are any notable differences between treated and untreated patients.
“If it’s a proven a treatment, I will hold the MS Society of Canada responsible in the court of law.” - Mark Lane
Mark Lane of St. John’s has also battled with MS, and improved significantly since the liberation treatment both medically and physically. These findings have been observed and documented by Dr. Stefanelli.
Placebo effectAt this point, doctors view liberation treatment as nothing more than a placebo effect.
“Whether it’s just in my head or the treatment works, I don’t care. I’m getting better,” said Mr. Lane, whose undergraduate degree in biology and science has taught him a thing or two about placebo and its effects.
“Placebo effect is supposed to last less than 90 days. Yet, Michael’s approaching a year, and I’m approaching 180 days, and I’m twice beyond what I should be.” In other words, these men’s days of healing exceed the placebo timeline.
In their experience, liberation treatment has helped heal Mr. Lane and Mr. Duffy beyond their expectations. Before the treatment, these men could barely function. Post-treatment, they are fully functioning human beings.
For some, like Ms. Collins, recovery has been barely noticeable. According to research, MS causes brain damage and every attack causes more disability and brain damage. Due to the length of time and severity of her attacks, Ms. Collins’ brain damage is significant and could be irreversible.
Mr. Lane explained when he was diagnosed with MS, doctors found three lesions on the brain. His disability was severe. He couldn’t write his name, button his shirt, or tie his shoe laces. He lost complete sensation in his hands. However, his brain damage was minimal.
It is very discouraging for the victims of MS when the fight to conquer the disease is coupled with an equally arduous task to win support from the medical community.
Dollars and nonsenseThe medical establishment says it’s an unwarranted risk to expose someone to a treatment that has not been scientifically proven. Easter Seal’s executives, Mr. Lane and Mr. Duffy, said the real reason comes down to dollars and cents.
“There are $20 billion MS drugs a year sold in North America,” said Mr. Duffy.
These findings confirm to MS sufferers that the MS Society of Canada has been staying true to the drug companies, rather than people with MS.
“They’ve deserted people like me. They were supposed to raise money for MS, but they didn’t. The drug companies fund the MS Society, and they’ll say the funding is less than five per cent. They’re (MS Society of Canada) full of it. It’s more. Five out of their 10 biggest donors are drug companies.”
When
The Beacon called Jessie McNeil of the MS Society for comments, she insisted the MS Society of Canada is not entangled with pharmaceutical companies
“We receive on a national scale less than two per cent of our annual revenues from pharmaceutical companies, and that money is typically used for education,” said Ms. McNeil.
She explained that the MS Society of Canada’s affiliation with MS drug companies has done a lot of good.
“Well, the drugs that are used are good for people with relapsing or remitting MS, and so there are lots of people who benefited from those meds and improved their quality of life greatly,” said Ms. McNeil.
Mr. Lane strongly disagrees.
“I pump myself with three injections a week at $300 each, but it does nothing.”
Ms. McNeil admitted that MS drugs do not work for everyone, and said the MS Society will continue to find other solutions.
When Mr. Lane reached out to the MS Society of Canada for help, he was turned down.
“They said they were going to do nothing, and to me that’s irresponsible and ignorant. They say don’t worry you can’t die because of MS, and that’s hogwash. I know of people who died because of MS,” said Mr. Lane.
He plans to take legal action if the liberation treatment is proven scientifically valid.
“If it’s a proven a treatment, I will hold the MS Society of Canada responsible in the court of law. It’s absolutely shameful that an organization – consumer-driven apparently – refuses to listen to its members. Even if the treatment comes to nothing, the MS Society still failed,” said Mr. Lane.
As he advocates more care and respect in the front lines, many like Ms. Collins continue to transcend the barriers to better health.
sstein@ganderbeacon.ca 
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