MS patients eager for news of, chance for unproven Italian therapy

It hasn’t been proven yet to be useful, but that isn’t stopping people with multiple sclerosis from seeking an experimental treatment that has taken their community by storm.

TORONTO — It hasn’t been proven yet to be useful, but that isn’t stopping people with multiple sclerosis from seeking an experimental treatment that has taken their community by storm.

In the face of a tsunami of requests for information, the Multiple Sclerosis Society of Canada held an information session last week in Toronto to lay out what’s known about the condition dubbed chronic cerebrospinal venous insufficiency or CCSVI.

Officials expressed excitement tempered with caution. But a number of people in the actual and online audiences — the session was webcast — were clear they want to be tested for CCSVI and treated for it as soon as possible.

Cathy Groves of Midland, Ont., was one of them. Groves, who turns 52 this week, has had MS for 16 years.

“I’m really anxious to get it done now,” she said during the meeting. Later she appeared unfazed by the fact that the procedure advocated for treating CCSVI — blockages of veins in the neck that drain oxygen-depleted blood from the brain — hasn’t been proven to help MS patients.

“I just feel that it’s a very little thing they’re going to do — it’s not that invasive,” Groves noted, insisting it would not be as difficult, physically, as two caesarean sections she had.

Yves Savoie, president and CEO of the society, said his organization has faced this kind of eager optimism since word of the new theory about what may cause MS hit the airwaves last fall.

The notion is the brainchild of Italian vascular specialist Dr. Paulo Zamboni, who has theorized that MS is triggered by vascular problems, not an aberrant autoimmune response as is now thought.

Zamboni argued that twisted blood vessels that take blood from the brain cause the condition and lead to a buildup of iron in the brain.

He has said he has treated it by using vessel-opening techniques such as angioplasty that are used to unblock clogged arteries that develop with heart disease.

The professor of medicine at the University of Ferrara calls the experimental treatment “the liberation procedure.”

His test of 65 patients seemed promising and people with the degenerative disease have been keen to explore its potential.

Scientists are racing to study the theory and the Canadian and U.S. MS organizations are joining forces to fund research projects.

But one followup done by researchers in Buffalo, N.Y., has suggested Zamboni’s initial claims may have been overly optimistic. Scanning of the veins of 500 patients there showed only about half had the blockages Zamboni blames for MS. And nearly one-quarter of people who don’t have MS had the clogged veins.

Dr. Jock Murray, a leading Canadian MS clinician, stressed those caveats when he outlined what is known so far about CCSVI.

He repeatedly noted that clinical trials need to be done to see if opening up blocked neck veins is useful and safe.

“The situation here though, is everything has been so rapid that it’s jumped from a hypothesis to a treatment,” Murray said in an interview.

“People aren’t interested in waiting to get those results.”

Murray has written a history of MS and says there have been numerous times over the years that optimism a cure was imminent has swept through the community of patients and their loved ones. He described a roller-coaster-like situation where the highs of hope are followed by the troughs of disappointment.

“It’s very hurtful to the MS population to have this repeatedly happen. And so if this doesn’t play out, you can see from the emotion in the room how hurtful this is going to be to MS patients and their families,” he said.

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Finance Minister Chrystia Freeland, centre, tables the federal budget in the House of Commons in Ottawa on Monday April 19, 2021. The federal government unveiled spending plans to manage the remainder of the COVID-19 crisis and chart an economic course for a post-pandemic Canada. THE CANADIAN PRESS/Sean Kilpatrick
ATB Financial: Five things to know about the federal budget

Five things stand out above the rest in the federal government’s budget,… Continue reading

House sales remain hot in central Alberta with first-quarter sales nearly double last year’s numbers. Photo by PAUL COWLEY/Advocate staff
Central Alberta real estate market hot in 2021

Residential sales nearly double 2020 in first quarter

Red Deer Mayor Tara Veer gave an update on Olymel's COVID-19 situation on Wednesday. (File photo by Advocate staff).
Veer addresses rising COVID-19 cases in Red Deer

Red Deer has added nearly 200 cases of active COVID-19 cases in past week

Alberta’s chief medical officer of health Dr. Deena Hinshaw and Premier Jason Kenney say the province would look at adding additional COVID-19 measures in the coming weeks if the virus continues to spread. (Photo by Government of Alberta)
Walk-in COVID-19 vaccination clinic to open in Red Deer

Alberta adds 1,345 new cases of the virus

Innisfail RCMP are investigating a single-vehicle crash that happened west of Bowden on March 21, 2021. (File photo by Advocate staff)
RCMP investigate culturally insensitive graffiti at Sylvan Lake school

Sylvan Lake RCMP is investigating a vandalism incident. On April 17 around… Continue reading

A vial of the Medicago vaccine sits on a surface. CARe Clinic, located in Red Deer, has been selected to participate in the third phase of vaccine study. (Photo courtesy www.medicago.com)
Red Deer clinical research centre participating in plant-based COVID-19 vaccine trial

A Red Deer research centre has been selected to participate in the… Continue reading

Gwynne Dyer
Bolsonaro: Suicide by COVID

‘Rounding into the home stretch, it’s Italy by a full length, then… Continue reading

Queen Elizabeth II during her visit to Red Deer, June 28, 1990. (File photo by Advocate staff)
Red Deer and the Royal Family

The recent passing and funeral of Prince Philip, Duke of Edinburgh, in… Continue reading

Vancouver Canucks' Tanner Pearson, right, celebrates after scoring against Toronto Maple Leafs goalie David Rittich during the third period of an NHL hockey game in Vancouver, on Tuesday, April 20, 2021. THE CANADIAN PRESS/Darryl Dyck
Pearson, Sutter each score twice as Canucks dump Leafs 6-3

Pearson, Sutter each score twice as Canucks dump Leafs 6-3

Everton's Gylfi Sigurdsson celebrates with teammates after scoring his side's second goal during the English Premier League soccer match between Everton and Tottenham Hotspur at Goodison Park in Liverpool, England, Friday, April 16, 2021. (Peter Powell/Pool via AP)
Super League collapses after the 6 English clubs withdraw

Super League collapses after the 6 English clubs withdraw

Boston Red Sox starting pitcher Eduardo Rodriguez delivers against the Toronto Blue Jays during the first inning of a baseball game Tuesday, April 20, 2021, at Fenway Park in Boston. (AP Photo/Winslow Townson)
Bogaerts’ 3-run HR, Rodriguez lift BoSox over Blue Jays 4-2

Bogaerts’ 3-run HR, Rodriguez lift BoSox over Blue Jays 4-2

Pound says Olympic qualifying issues a concern to IOC

Pound says Olympic qualifying issues a concern to IOC

Former University of Victoria rowing coach Barney Williams is photographed in the stands during the Greater Victoria Invitational at CARSA Performance Gym at the University of Victoria in Victoria, B.C., on Friday, November 29, 2019. THE CANADIAN PRESS/Chad Hipolito
Rowing Canada sanctions former head coach of B.C. varsity women’s team

Rowing Canada sanctions former head coach of B.C. varsity women’s team

Ontario Hockey League cancels 2020-21 season as COVID-19 cases surge in province

Ontario Hockey League cancels 2020-21 season as COVID-19 cases surge in province

Most Read