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Winnipeg Free Press - PRINT EDITION

High hopes for MS research

Province asked to study controversial treatment

By: Melissa Martin

Posted: 04/22/2010 1:00 AM | Comments: 0 (including replies)

Duncan Thornton, 47, who had vein-opening treatment at a clinic in Poland, addresses the crowd at Earl Grey Community Centre. (PHIL.HOSSACK@FREEPRESS.MB.CA)

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Attendees listen intently during Wednesday’s gathering. (PHIL.HOSSACK@FREEPRESS.MB.CA )

While they listened, they held hands. They leaned forward. They joked and chuckled.

But underneath the smiles and nods from the 100 people at Earl Grey Community Centre on Wednesday night, a firm message: Supporters of a controversial new approach to multiple sclerosis are raising their voices and they're going to keep raising them until the research comes home to Manitoba.

Wednesday night's two-hour public meeting, the first offering from a new grassroots patient advocacy group called CCSVI Manitoba, served as their opening shout. "Each and every one of us have to push," advocate Sharlene Landygo-Garlinski told the crowd.

"We will be heard."

In the months ahead, there will be more outcries. On May 5, the same day that advocates of the so-called "Zamboni breakthrough" rally in cities such as Calgary and Vancouver, CCSVI Manitoba will march on the legislature to demand the province move forward on studying the hotly debated link between narrowed veins in the head and neck and multiple sclerosis. The vein condition has been named chronic cerebrospinal venous insuffiency, or CCSVI.

For four months, headlines about what one television special dubbed "the liberation war" have blazed. It could be one of the most exhilerating dialogues on medical research in years. But the discussion has sometimes been spiked by accusations: Somesupporters say that MS authorities have been suspiciously resistant; somecautiousMS experts say the buzz over CCSVI has sold a prescription for hope that the data, right now, doesn't support.

In the Earl Grey community room, Manitoba's highest-profile CCSVI advocate put the kibosh on that tensetug-of-war. "I don't think there's a conspiracy to squelch this,"declared Duncan Thornton, 47, who hada controversial vein-opening treatment at a clinic in Poland while CBC cameras rolled. "(But) it's hard for me to change my mind... (so I think) it's hard for the large mass of the MS establishment to do that too."

Many of the 100 pairs of ears in the Earl Grey room hung on Thornton's words. Minutes after his veins were opened in a $10,000 balloon angioplasty procedure last month, he said, he had warm fingers. Warm toes. And now, more energy than he'd had in almost 25 years. After Thornton finished telling this to the Earl Grey crowd, hands shot up. "Before your treatment, could you stand on that chair the way you're doing?" asked Cathi Sleva, who came to the meetingto supporta friend with MS.

"Not without falling over," Thornton said quietly.

No wonder there were smiles. "I look around this room and I see people holding hands," said organizer Nicole Boyd-Benes. "I see the hope in this room, and that's why we're here."

For hope and community. Four months ago, Kathy Allen, 56, was "somewhat timid" about pushing for CCSVI research, she said, admitting she's not very Internet savvy and didn't know how to connect to others interested in the issue. After the session on Wednesday, she was among the first in line waiting to talk to organizers and volunteer to help promote the rally

"There's a motivation (with the group)," said Allen, who has had MS for 35 years. "And the feeling that 'yes, we can contribute to some of the pressure.' There's something you can do... it gives us an avenue."

melissa.martin@freepress.mb.ca

Republished from the Winnipeg Free Press print edition April 22, 2010 A4

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