Fw: [MS_Community] Studies in 2011 could decide MS theory's validity....From Carol Belluccio

December 29, 2010

Subject: [MS_Community] Studies in 2011 could decide MS theory's validity

Studies in 2011 could decide MS theory's validity

Posted by: " DellaVento@... " DellaVento@... dellavento

Mon Dec 27, 2010 3:27 pm (PST)

A happy and healthy 2011 to everyone at Jjs

Dellavento

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_http://www.ctv.ca/CTVNews/Health/20101227/ms-liberation-treatment-studies-1

01227/_

(http://www.ctv.ca/CTVNews/Health/20101227/ms-liberation-treatment-studies-10122\

7/)

Studies in 2011 could decide MS theory's validity

A scan shows the veins in the neck that are involved in the 'Liberation

Treatment' for MS.

*

* The Canadian Press

Date: Monday Dec. 27, 2010 12:31 PM ET

TORONTO - Almost exactly a year ago, a theory about a potential

contributing cause of multiple sclerosis burst into the public consciousness.

For

many MS sufferers, it seemed an answer to their prayers; for the medical

community it was variously viewed as a promising notion worthy of investigation

to scientific nonsense or even an outright scam.

What can be said for certain, however, is that no other medical story has

dominated the headlines in 2010 as the contention by an Italian vascular

surgeon that narrowed neck veins could be an underlying cause of MS.

Dr. Paolo Zamboni speculates that reduced blood flow leaves iron deposits

in the brain, leading to the neural lesions typical of MS. He suggests that

reversing the condition -- dubbed chronic cerebrospinal venous

insufficiency, or CCSVI -- by unblocking neck veins could help alleviate

patients'

symptoms or possibly halt progression of the debilitating disease.

News of his theory created an avalanche of interest among people with MS

and their loved ones, fuelled by discussion on Internet social media sites,

YouTube testimonials by MSers " liberated " by Zamboni's suggested technique

for opening up the blood vessels, and hundreds of articles in the mainstream

media.

In reaction to pressure from MS patients advocates, a few provinces have

announced funding for various studies to help determine if Zamboni's theory

has any validity. But the federal government is steadfast in its decision to

hold off financing a pan-Canadian clinical trial of the procedure until

several other studies underway show whether CCSVI is indeed a hallmark of

people with MS compared to those without the disease.

Meanwhile the MS Society of Canada has come under criticism for its

handling of the issue, initially saying it could not back a scientifically

unproven theory, then asking Ottawa to provide $10 million to investigate the

concept, and finally supporting the federal government's decision to wait.

" I think from all perspectives -- the patients' perspective, the medical

community, the media, the social arena -- the word that describes it for

everybody is roller-coaster, " Ian Rodger, director of research at St. ph's

Healthcare in Hamilton, says of the last 12 months.

" A year ago, the notion when it was first released, gave people a huge

amount of hope. And we heard all the positive stories and so it took off like

wildfire. "

But as time has passed, reports have increasingly emerged about people who

experienced little or no benefit from the procedure, says Rodger, who is

leading a study looking at the prevalence of CCSVI in both MS patients and

healthy controls. " We don't hear so much about them, but I think we now

recognize that it's not a universal panacea. "

That hasn't stopped MS patients from seeking the treatment, which is not

approved for CCSVI in Canada. Known as venous angioplasty, it involves

inflating a tiny balloon inside the veins to expand them and restore blood flow.

In the last year, an estimated 3,000 Canadians with the disease have

travelled to clinics that have popped up around the world -- from Bulgaria and

Poland to Costa Rica and Mexico to India and the United States -- paying

thousands of dollars each for the procedure.

Among them was an Ontario man who died in October after blood clots formed

around a stent that doctors in Costa Rica had placed in one of his veins to

prop it open. Stents are often used by clinics offering the procedure,

despite Zamboni's caution that they shouldn't be used.

" There's a lot of unfortunate things that have occurred, " says Dr. Jock

Murray, who recently retired as head of the MS research unit at Dalhousie

University in Halifax. " One of the really unfortunate things is that it has

polarized all the groups that are normally co-operating. "

" So you have now the patients who see themselves pitted against the doctors

and the neurologists. They also feel they are not being supported in the

way they want to be by the MS Society, so now they're attacking the MS

Society.

" And they're now pitted against the politicians, because they don't see the

politicians as being supportive as they would like to see. "

Murray, a member of a working group advising the MS Society on CCSVI, is

among the minority of neurologists who agrees Zamboni's concept should be

scientifically assessed, like " any other theory of interest. "

For Molyneux of Toronto, whose 23-year-old son with MS had venous

angioplasty in Bulgaria six months ago and is showing improvement, there is no

question it should be investigated -- and more than that, she says the

procedure should be provided by Canadian hospitals.

" MS patients would be happy if it was just available to pay for here in

Canada, the way they might pay for a nose job or whatever, " says Molyneux, one

of a number of activists raising money to fund CCSVI research.

She points out that her son's improvements have been gradual, " not an

overnight epiphany. "

" And I think that's what people should look towards if they're going to

have this procedure, not that they're going to jump out of their wheelchairs,

but that gradually they might start feeling somewhat better and have an

improved quality of life. "

Ted Robak, a professor of forestry engineering at the University of New

Brunswick, believes that having his neck veins unblocked at a Polish clinic in

April has not only improved his MS symptoms, but also will keep him

working and mobile.

Diagnosed in 2004 with secondary progressive MS, one of the more advanced

and debilitating forms of the disease, the 57-year-old says he expected he

would have to leave his job in the coming year and be forced to use a

wheelchair instead of a cane to get around.

" It's changed a lot, " Robak says of his condition, particularly his level

of fatigue, which had forced him to take several naps a day in order to do

the simplest of tasks.

" I don't have to steel myself to do little things like go down and check

the mail in my apartment. My mobility has improved some ... I don't use the

cane anymore except for longer walks ... I'm not talking about retiring or

going on disability this year. "

Robak, who spent about $9,500 for the procedure plus another $4,000 for

travel-related costs for him and his wife, wasn't prepared to wait the 10

years it might take to rigorously test Zamboni's theory to prove that it works.

And he doesn't think others with MS who can't afford to travel outside

Canada for the procedure should have to either.

" We're talking about people who are going downhill. If somebody told me

that let's say five years after this I would be exactly the same as I was when

I had the treatment (and had not become worse), do you realize how much MS

patients would pay for that? How happy they would be? "

It was that hope of improving the quality of his life and stopping the

relentless progression of MS that sent Ben Steinfeld to an Albany, N.Y., clinic

for the procedure in November, at a cost of about $5,000.

But the former Toronto journalist, whose career was cut short by the

disease several years ago, has not seen a dramatic change in his symptoms, which

include hand tremors and an inability to walk more than about six metres

unaided.

" Are there improvements? Yeah. Do I have better blood flow? Yeah, I know I

do, " says Steinfeld, who feels he has more energy and a better colour in

his skin.

" But did my tremor go away? No. Can I walk like a I was going for a stroll

in the park? No. But I couldn't before. The bottom line is I'm definitely

no worse off, it was definitely a non-invasive, non-negative experience. "

Steinfeld, who believes Zamboni's theory has validity but needs refining,

recalls that one neurologist he consulted dismissed the notion as here

today-gone tomorrow, like so many other purported causes of MS that caused a lot

of excitement over the years, then fell by the wayside when they didn't

hold up.

" In a year from now, it'll be totally forgotten, " was the way the doctor

phrased it, he says.

Given the level of interest -- and some would say hype -- it's unlikely

Zamboni's theory will fade away anytime soon.

" We're going to proceed with this, trials are going to go on, even though

patients object to the time (they will take), " says Murray.

" I think the level of dialogue is going to calm down somewhat. It's going

to become a little more balanced as patients speak more about lack of

benefit or complications. And so I think it's not going to go way, but I don't

think it's going to increase. "

Rodger agrees, saying the coming year will see more studies being conducted

in well-controlled environments that will provide more definitive answers.

" If we were having this conversation a year from now, I think there'd be

evidence that leads us in one direction or another: `Yes, it's a correct

hypothesis' or 'You know what, no it doesn't stand up to scrutiny. " '

December 29, 2010