When a progressive, incurable disease, such as multiple sclerosis, meets a possible remedy, such as venous angioplasty, demands for treatment, verification and information soon become overwhelming.

In this age of social media, personal anecdotes and comment soon fill web-based chatrooms and online sites. Conspiracy theories spring up, with some people becoming convinced they are being denied treatment by turf-protective doctors, experts and advocacy groups.

But a conference being organized for Sept. 10 in Sidney is designed to move the discussion of venous angioplasty from the Internet into the open.

Sandra Birrell, an MS patient and vice-president of the National CCSVI (Chronic Cerebrospinal Venous Insufficiency) Society and an early operator of a website exploring the procedure, said she has encountered conspiracy theories herself.

But it's time for open, face-to-face discussions among researchers, doctors, patients and their families to discuss what appears to be an exciting new treatment.

"We needed to move off Facebook and all the social media," said Birrell, who has had venous angioplasty in a California clinic.

"The sooner these doctors can get together and collaborate, the faster we'll see things move forward," she said.

Birrell said she hopes the conference will attract as many as 200 people. They are expected to share information about the controversial new treatment for MS, known variously as liberation therapy, venous angioplasty or the Zamboni treatment, after its Italian pioneer.

MS is a degenerative disease afflicting as many as 75,000 Canadians. It's marked by a deterioration of the fatty sheath covering the nerves, called myelin. Nerves lose their ability to properly conduct messages from the brain, and patients develop tingling, weakness and paralysis and generally lose control of their bodies.

In 2008, vascular surgeon Dr. Paolo Zamboni rocked the medical world by publishing a paper suggesting MS is the result of compromised blood flow in veins found in the neck. These malformed or blocked veins drain the nervous system, including the brain, hence the term the "chronic cerebrospinal insufficiency."

Prior to Zamboni's work, MS had been considered an auto-immune disorder of the nervous system. For some unknown reason, the body's defences are triggered to attack the myelin sheath.

MS had always been the treatment purview of neurologists, physicians who specialize in disorders of the nervous system.

But Zamboni theorized that the malformed, twisted or even blocked veins in the neck lead to iron deposits in the brain, which in turn trigger the auto-immune response.

He developed a procedure for clearing those veins with angioplasty, inserting and inflating tiny balloons. The procedure is already well known for opening arteries supplying the heart.

Zamboni and others have reported successes among patients who have undergone procedures to open the veins in their necks.

Since the first reports went public, hundreds of MS patients have flown to clinics as far away as India, paying tens of thousands of dollars to have veins in their necks cleared.

Clinics in the U.S. have opened and some offer the procedure for less than $10,000.

But the procedure has yet to undergo the rigorous testing applied to new medications before they go on sale.

Recent reports, such as one by a group called the International Multiple Sclerosis Genetics Consortium, with participants from universities including Cambridge and Oxford, have suggested the disease is the result of genetics. Some have used the results to pooh-pooh Zamboni's blocked-veins theory.

Nevertheless, the Canadian government has pledged financial support, without specifying how much, for a clinical trial of venous angioplasty.

MS patients have yet to give up on the procedure. Birrell said that after her treatment, she found she stopped choking as badly and her painful bowel spasms receded. So nobody can tell her the procedure isn't worthwhile.

"People are not satisfied with the status quo," said Birrell.

"They are not satisfied with the drug regimes and they are not satisfied with the neurologists who are simply watching us get worse."

Todd Abercrombie, executive director of the MS Society of Canada, southern Vancouver Island chapter, said he can appreciate the impatience of many MS sufferers.

"With a disease like MS it's difficult, it's chronic and people say, 'Look, I'm not willing to wait another year or two when my health is getting worse,' " said Abercrombie.

But he also pointed out that the Zamboni procedure comes with risks, like all surgeries. Two Canadians have died after the procedure — a woman from Calgary treated in California in April and a man from Ontario treated last year in Costa Rica.

Abercrombie conceded that the MS Society has earned rebukes from patients over its slowness to engage over the procedure. But locally, he said, his group has worked hard to remain open.

Meanwhile, almost all the information now is anecdotal. Little scientific or statistical analysis has been completed. So Abercrombie is putting faith in the federal government's promise of research.

"You've got to do the proper studies," he said. "If you don't, it's still a bit of the Wild West."

Abercrombie is also excited about another federal initiative announced in March.

The Canadian Institute for Health Information, through funding from the Public Health Agency of Canada, is working with other partners to collect clinical and demographic information on MS patients from clinical settings to help develop a new national system to measure and monitor MS treatment in Canada.

The MS Society of Canada also has set up a website for patients to post their information about the treatment.

"If they don't get it from your site, they are going to start disregarding," said Abercrombie. "And we didn't want people to stop factoring us into their equations."

Dr. Bill Code, a retired anesthetist living in Duncan, and an MS patient who has received the treatment with positive results, is also impatient with calls for caution and more research.

For one thing, testing surgery is different from testing drug therapy, Code said. He noted it can be easy to arrange a drug trial with a control group of patients taking a placebo, or phoney medication, to compare with patients taking the real thing. But he doubted any ethics committee would condone phoney surgery on any patient.

Code is convinced the opening of the malformed veins is one of the most important breakthroughs in the treatment of brain disorders in decades. It could hold the clues to untold other brain or nervous disorders.

The conference will take place at the Mary Winspear Centre.

For information on how to register, go to nationalccsvisociety.org. Advance registrations are requested by Thursday.

rwatts@timescolonist.com

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