UBC MS group wants to test Italian professor's treatment claim

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      As if having two children in elementary school wasn’t enough to keep her busy, a decade ago Marilyn Lenzen was also working full-time and remodelling her house. The fact that she was exhausted all the time seemed to make sense. But she knew something was amiss when she started feeling burning pain in her legs.

      Her younger sister had been diagnosed with multiple sclerosis a few years earlier, so she suspected she too could have the potentially debilitating condition. But Lenzen, then 40, still had to brace herself for the news.

      “It’s always a shock when your doctor says you have MS,” Lenzen tells the Georgia Straight in a phone interview. “You have to go through a grieving process. Living with this disease changes your life.”

      MS attacks myelin, the brain and spinal cord’s protective covering. The resulting inflammation of and damage to the myelin disrupts the normal flow of nerve impulses.

      Effects of the complex disease vary greatly from person to person and range from dizziness and impaired speech to vision problems and paralysis.

      What Lenzen notices the most is extreme fatigue: she has to make sure she gets a solid sleep every night and naps or puts her feet up during the day. She has the relapsing-remitting type of the disease, which means it goes through phases, as opposed to the secondary-progressive form. In 2001, she had so little strength she had to use a scooter to get around. These days, she walks a few times a week and plans on participating in the Multiple Sclerosis Society of Canada B.C. and Yukon division’s Scotiabank MS Walk on April 25.

      Lenzen also takes several medications, known as disease-modifying drugs.

      But the treatment of multiple sclerosis could change dramatically if the results of a controversial approach by an Italian doctor can be backed up by rigorous study. And a Vancouver team hopes to be part of that research.

      Paolo Zamboni, a professor of medicine at Italy’s University of Ferrara whose wife has MS, found that more than 90 percent of a group of people he studied with multiple sclerosis had malformations or blockages in the veins that drain blood from the brain. He called this condition “chronic cerebrospinal venous insufficiency” (CCSVI).

      By using a simple—though experimental—procedure similar to angioplasty, he dilated the veins to clear the blockages. His patients experienced tremendous and immediate relief of symptoms. They nicknamed the surgery the “liberation procedure”.

      Vancouver neurologist Anthony Traboulsee, medical director of UBC’s MS clinic and clinical-trials group, acknowledges that the approach has promise and its potential is exciting, but he cautions that solid evidence is still lacking.

      “There have been two papers written by the same person,” Traboulsee says in a phone interview. “In medical circles, that’s pretty soft. There’s not a lot of science yet.”

      He notes that in Zamboni’s study, there was no group of patients who acted as “control” or untreated subjects, without which it’s impossible to rule out bias or the placebo effect.

      There are two questions that need to be answered, Traboulsee adds: do all people with MS have narrowing of the veins? And will surgically opening the veins prevent the disease from causing new damage?

      “It comes back to the vascular question,” Traboulsee says. “[In the Italian study,] after that narrowing was dilated, people felt better. It’s a big leap that feeling better is a cure for MS. It might improve their symptoms”¦but does it truly stop the disease from getting worse? It’s probably too much of a stretch, as much as we want that.”

      What Zamboni’s research hasn’t taken into account, Traboulsee says, is that many people with the disease feel better “spontaneously”.

      “If we don’t control for that variable, we won’t know if it’s because of the treatment,” Traboulsee says. “He admits that this is its biggest weakness.

      “That’s not to say his study was inappropriate. It’s a new idea. It’s pilot data. It’s an intriguing concept, but it’s not the end of the line. Now the hard work begins.”

      Traboulsee and his team are applying for funding from the MS Society of Canada to further investigate CCSVI. The UBC MS clinic belongs to the Canadian Network of MS Clinics, which concurs that more research into Zamboni’s findings is urgently required. A nationwide study is a possibility.

      Traboulsee says he empathizes with people who have MS who want answers now.

      “The challenge with CCSVI is that it brings up an emotional response; it draws up a lot of passion,” he says. “It’s understandable, considering this is a disease that really alters people’s perception of illness. When you have the flu, you get better. This is a lifelong disease.

      “It hits people in the prime of their life, between ages 20 and 40, when people are getting married, having kids, developing their careers; it impacts on so much.”

      He says that so far most local patients have accepted the need for more scientific testing but some have opted to go to other countries to get the procedure done. It’s a move he doesn’t suggest.

      “We recommend people on a treatment plan stay the course until the dust has settled,” Traboulsee says. “People are anxious for cures.”



      Robert Powell

      Mar 4, 2010 at 4:22pm

      I agree with what Dr. Anthony Traboulsee says about the research that is required and needed to prove and support the finding of Dr. Paolo Zamboni's "Liberation Procedure". The big question is whether the procedure is actually a cure or does it only give temperary relief. These questions have to be answered.
      This research is going to require a tremenous amount of money to perform. Why hasn't our federal government jumped on this issue and announced some kind of support for this research. I have not seen any support from the federal level whether from the Conservatives or the opposition parties. Afterall the procedure in question is monumental in its ability to help thousands of people. May I suggest we put pressure on our MPs to get on the bandwagon and start showing support for this huge endeavour.


      Mar 4, 2010 at 5:33pm

      It would cost a tremendous amout of money to research this new idea but it is a drop in the ocean compared to the billions drug company's make from this disease,the drug company's provide thousands of jobs and have a powerful lobby,call me a sceptic but drug company's never want diseases to be cured.

      Chris Hambruch

      Mar 4, 2010 at 7:11pm

      I truly believe this is an issue that needs to be for the time being cut into two parts, first investigate the circulatory issue of the vein restriction and deal with the positives and negatives of treating that. In parallel, I would see the relationship between CCSVI and MS being investigated. The question of what came first the chicken or the egg, the MS or the CCSVI? I think lumping the two together at this time is only slowing things down in extending the waiting time to have circulatory issue with in our bodies dealt with. Whether or not there is a relationship to MS there is a circulatory problem. Circulatory problems have been dealt with for many many years. And I don't understand why they can't be dealt with now! Angioplasties and stents have been used for many years in curing circulatory issues, heart problems. Get the horses pulling the wagon, get to work to figure out how to open up these arteries, keep them open and cure the circulatory problem. Even if the MS is still hanging on afterward at least a circulatory problem is gone.

      Bill Hayward

      Mar 4, 2010 at 8:22pm

      Neurologists are not the people to qulaified to judge CCSVI. Vascular surgeons are the professionals that have the expertise. I agree with Chris 100%. The circulatory issue is what can easily be diagnosed and treated if found. If a person happens to have MS and the treatment mitigates or improves, even for a short period, any of their day-to-day challenges then that will be a bonus.

      blanche norton

      Mar 4, 2010 at 10:22pm

      What is missing from the Georgia Straight article is the study last month out of Stanford University and Buffalo. 300 people with MS tested for CCSVI. All had it, were operated on. As mentioned above - chicken/egg? Correct circulatory problems, observe.

      Kate Grant

      Mar 5, 2010 at 5:15am

      My husband and I would really like to find out more about this operation does anyone know how we can do this?


      Mar 5, 2010 at 9:22am

      If it cures M.S. once for all or stops it it's a big issue that might take a lot of time to investigate and be certain of its success. However, many of us sufferers don't have this luxury of time and strength to wait and wait and wait for the wonder magical medicine that will cure us. I was really thrilled when I read the news and they sound more logical to me than for example, the possible luck of sun as one of the reasons of the illness. I find the new suggestion more reasonable that everything I have heard all the 20 years I suffer from M.S. I would suggest therefore, please stop the philosophical discussions and try to seriously help us fast, now. 'Now' is only what we have. Even if this is not the cure, the reason of why M.S. happens, even if it is only a small relief we do need it desperately. Please give the patients the option to choose if they will do it or not. give us the freedom to make a choice for our difficult lives. Make us feel even 1% better. At the end of the day this news comes from a scientist who happens to be also the husband of a lady with M.S. and has tried to make her feel better. It hasn't come from a multinational company that together with weapons manufactures medicine to 'cure' what its own weapons have done to people and to the environment.

      Suzanne Jay

      Mar 5, 2010 at 10:29am

      I thought it would be useful to add some background information to this informative article. The MS Society of Canada was the first MS Society in the world to call for research proposals into the idea of CCSVI and MS. Funds were immediately dedicated to exploring the CCSVI idea outside our regular funding calendar so that qualified investigators based in Canadian institutions could begin this process on a very quick timeline.

      These proposals are currently being peer-reviewed by an international panel. Announcements about funding will be made in June. In addition to this special competition, researchers can also apply to the regular annual research funding program.

      We hope that this unprecedented and swift response will accelerate investigation into CCSVI so that we will be able to proceed with full knowledge about the benefits, risks and reliability of the intervention.

      The MS Society has called for both provincial and federal level governments to follow our lead and support the cross-Canada network of end MS research and training centres created and funded by us to accelerate research activities that will find a cure and improved treatments for MS. More information on this advocacy and on CCSVI can be found on our website. www.mssociety.ca

      The MS Society of Canada is able to act because of support from people like Marilyn Lenzen, her friends, family and community to fundraising efforts such as the Scotiabank MS Walks taking place in 26 different communities across BC and Yukon. We hope you will support these community events - funds raised make an impact at local and national levels.

      Suzanne Jay
      Director, Communications
      MS Society of Canada, BC & Yukon Division


      Mar 5, 2010 at 6:05pm

      You mentioned that Dr. Anthony Traboulsee noted "that in Zamboni’s study, there was no group of patients who acted as “control” or untreated subjects, without which it’s impossible to rule out bias or the placebo effect."

      Odd, I note 235 control subjects listed in Dr. Zamboni's paper "Chronic cereborospinal venous insufficiency in patients with multiple sclerosis"(published 12/5/08) I find it interesting that Dr. Traboulsee did not see this in the very beginning of this paper if he claims to have read both of Dr. Zamboni's papers.

      I agree we must be careful to make sure we are not randomly treating people for something that has no merit. I also believe that Dr. Zamboni covered his initial research with a large control group compared to his small (65 patients) group of MS patients and this data can not be ignored. BNAC's initial research proves there is merit to the venous issue and we must investigate it further.

      This may not be a cure, but it sure is curious that so many MS patients are showing this anomaly, don't you think?

      Linda B. - MS sufferer since 1991.

      Mar 6, 2010 at 8:01pm

      This must be made available to all those who are interested in getting it done. The Fed. Goverment already finances a similar treatment for heart patients. With so many of us living with MS, it's about time that chances are taken when there are examples of something that works - not just walks for MS or readathons for MS. How about an actual treatment for MS - with a truly positive outcome. We can't keep on hearing "we are now closer to a cure..."