Posts Tagged ‘MS’

Tory senators do something right for MS.

Saturday, November 24th, 2012

If this blog format allowed for a bigger headline, it would be bigger. Just because the writer of this blog is a known liberal does not mean he does not recognize people doing the right thing. And the Liberal senators who complained about the killing of Senate Bill S-204 should clam up. They do not know what they are talking about.

The politicizing of the Zamboni treatment for multiple sclerosis for the past three years has been a disgrace for both sides of the House and Senate. It is the increasing evidence that chronic cerebral venous insufficiency (CCVSI) has nothing to do with the incidence of MS is what convinced the Tory Senators to kill the bill. The Liberal senators were just not paying attention.

It all started with an over-blown CTV television report of discovery of a possible cure for MS being tried in Buffalo, New York. It was based on treatment developed by Dr. Paolo Zamboni of Ferrara, Italy. Dr. Zamboni, a vascular surgeon, had postulated that it was the impaired drainage of blood from the brain because of restricted flow through the neck veins that caused a build-up of iron in the patient’s brain. He reasoned that if he could improve blood flow from the brain, the symptoms of multiple sclerosis might be relieved.

The practice of CTV news to promote its other programs by running clips from them as news helped sensationalize the story. When it then ran on CTV’s W5 program, it had large numbers of MS patients watching to see this miracle they were being promised. There was soon a major controversy over Zamboni’s supposed cure and the MS Society of Canada was accused of suppressing the treatment.

Members of Parliament such as Barrie MP Patrick Brown used the Zamboni theory unmercifully to promote themselves. They promoted the people trying to get the Zamboni treatment immediately—and themselves, as people working to help the sick.

What they really did was cause fewer funds to go to the MS Society to pay for its legitimate research while forcing the society to redirect funds to properly test the Zamboni theories.

People heard little from these CCVSI advocates of those who died or were in worse shape after getting stents put in their veins by off-shore “clinics.” This bill working its way through the Senate was to authorize a national strategy to deal with the therapy and for a national registry of MS patients.

But, thankfully, it was stopped in the Senate. By this time, the overwhelming conclusion of the official studies is that people with MS have the same veins in their necks as people without MS. Dr. Zamboni does not have the answer. The search for the cure for multiple sclerosis continues.

(Note:  The author of this article is a past president of the Multiple Sclerosis Society of Canada and served on the management committee and as chair of public education for the International Federation of Multiple Sclerosis Societies.)


Copyright 2012 © Peter Lowry

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Creating controversy for Multiple Sclerosis.

Saturday, April 14th, 2012

“Just spell the name right please.” If you think any controversy is good news, you are mistaken. People who try to pose Chronic Cerebro-spinal Venous Insufficiency (CCSVI) as being opposed by the Multiple Sclerosis (MS) Society of Canada are wrong. The MS Society functionaries are not the bad guys.  The only people being hurt by this manufactured controversy are people with MS and their families.

Being a past president of the MS Society of Canada, a former executive member of the International Federation of Multiple Sclerosis Societies and being married to a person with MS for the past 50 years, we have some knowledge of the disease and what is being done about it. When we took over the MS Society in the early 1970s, it had a budget of $180,000 per year and that much in the bank to pay for its next year’s grants to scientists.

Our first act as president was to bring together all the leading neuroscience researchers from across Canada at the time and demand that they give us more and better research into MS to fund. We told them that whatever they brought to us, that our scientific board thought was of merit, we would fund it. When we stepped down from the executive, we were funding over $10 million a year in research and research fellowships.

At the same time, Canada had taken a lead position with the International Federation of Multiple Sclerosis Societies. We helped to strengthen the societies that existed, we helped create new societies where they were needed and we accelerated the growth of world-wide funding for MS research. We made MS a world-wide cause. Co-ordinated research from around the world was working on MS.

Our only regret is that we have yet to solve the mystery of MS.

And then along came Dr. Paolo Zamboni of Italy.  A vascular surgeon and professor, Dr. Zamboni postulated the theory that it was constrictions of the veins from the brain that cause MS symptoms. His ‘Liberation Treatment’ for MS patients was to use balloons and/or vascular stents to improve the blood flow. He had anecdotal success. He did not have the resources to do a full scientific study of his theory.

Both the American and Canadian MS societies set aside research funds to investigate Dr. Zamboni’s approach. Some experts thought it was worth checking out. Others were sceptical. You expect some differences of opinion. That is why you do trials and the layman can only keep an open mind.

But some people cannot wait. Politicians jumped on this side and that. Everyone likes a cause. Impatient patients wanted solutions now. That is understandable.

But to send patients off to places where the medical ethos is not as rigid as ours is endangering them. To take funds away from the controlled medical research and pour it into an unproved theory is to make a lie of all the hard work of people around the world who want the solution to MS. There will be a stream of reports available in the coming year from legitimate research into CCSVI. We hope it quells the controversy.


Copyright 2012 © Peter Lowry

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#95– The hijacking of caring No. 2 — A continuing saga.

Wednesday, October 27th, 2010

Most people think of Zamboni as a wheeled vehicle that repairs the ice between periods in hockey games. Since 2009, people involved with multiple sclerosis have become aware of Professor Dr. Paolo Zamboni, a vascular surgeon in Ferrarra, Italy who has claimed success in treating MS patients.  In publicizing his findings and in his interviews with the news media, Dr. Zamboni has been hijacking the caring.

It little matters at this stage whether Dr. Zamboni is right or wrong in his hypothesis.  If he is right, it will be a major breakthrough.  His first responsibility is to find a way to prove his hypothesis to his scientific peers.

Dr. Zamboni has yet to prove his theory and the procedure that he is promoting.  His fellow scientists are not kicking sand in his face.  They really want to find out if he is right.  There are hundreds of millions of many currencies ready to support the procedure and offer the treatment to MS patients—if it can be scientifically authenticated.  Responsible scientists do not try to prove their theories with anecdotal evidence.

And that is the problem.  Does Dr. Zamboni expect to be beatified by his church because he can say to an MS patient “Take up your bed and walk”?

What happens to the patient when five months from now, he or she realizes that they are not any better?  The placebo effect is rife in MS patients.  Vitamin B12 can also make you feel better—for a while.  Teenagers have told us that popping a few ecstasy tabs is supposed to make you feel you are king of the world.  And maybe it will—before a bad mix of that garbage in some thug’s kitchen kills you.

Caring people, MS people, are now being enticed to fly-by-night clinics in India and Poland and other countries with lax rules to have what is called “the Liberation treatment’ for which the operators liberate the caring of much money.  The operators are sending patients back to Canada without adequate post-operative information and a dangerous stent in a vein, ready to move to the heart and death.

It is hardly the caring people who are at fault.  They are desperate for a cure.  Dr. Zamboni is selling hope.

It is not really the fault of the grasping politicians who jump on the Liberation bandwagon to show their affinity, concern and need for votes.  They see it as a cause that they can appear to be supporting to keep them in the public eye.  They use it briefly and then go on to the next photo-op.

If there is a fault to be laid at someone’s door, in this country, it has to be laid at the door of the MS Society of Canada.  This is a failure in leadership.  Speaking to the key people of the Society the other day, the point was made: “That is our mob out there.  They are conflicted. They are caught between hope and science.  Hope trumps science anytime.

“Please take this opportunity to lead,” they were asked.

Whether they will or not, we do not know.  We can only hope.

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#93– The hijacking of caring.

Thursday, October 21st, 2010

In the beginning there was a disease.  The medical people were baffled by it.  They tried treating the symptoms, easing the pains with drugs as well as using leeches and popular incantations.  Nothing seemed to work.  They gave the message to the families: “We do not know.  In time, medical scholars will, if supplied with copious amounts of coin and fine facilities within which to work, study the disease and maybe, someday, they will accidently find a cure.”  They called the disease multiple sclerosis (MS).

It was not until after the Second World War that people with MS and their families started to connect with other families with similar concerns.  They found caring people out there who shared the concerns, knowledge and desperation for a cure.  They cared so much that they started banding together to collect coins and dollar bills and cheques with which to hire professional advisors and organizers to work for these people who cared.

Progress was slow at first.  Nobody knew much about this disease but these people who cared taught others about the disease, interesting doctors and care givers and researchers in the challenges of the disease.  Multiple Sclerosis came to be known as a medical mystery of major concern.

In Canada, these caring people were so successful that the Multiple Sclerosis Society of Canada became one of the best know national health agencies in the country after the Cancer Society and Heart and Stroke.  By balancing their objectives of services to patients, educating the public about the disease and funding carefully vetted research projects, they were raising the funds they needed to do their work.  In time, they raised millions of dollars each year.

The Canadian society was so successful that it could even share its success with other multiple sclerosis societies.  Canada’s caring missionaries were active in exchanging ideas with these societies, on how to raise money, how to teach people about the disease, how to care for patients and how to work with governments and medical researchers to ensure that there could be a coordinated, world-wide effort.  In time, their approach meant that many, many millions were being directed to solving the mystery of MS.

But in achieving their success, these caring people made a mistake.  They allowed themselves to be hijacked.  It did not happen suddenly.  They were hijacked over time.  It was an insidious process.  They lost control of the society they had built.  The professionals they had hired had gradually taken over.

Nobody said: “Let’s get rid of the caring people.”  That also just happened over time.  In more than 50 years of its existence, the MS Society of Canada hired more and more staff. The common excuse was that it was more convenient to do the work with paid staff.  It was more professional.

The type of people sought to be on the society’s boards also changed.  People who cared were not always the important people who could raise more money, add prestige to the boards or understand the power point presentations of the professional help.  It was not that the prestigious board people who replaced them were less caring.  They were just less connected with the disease.  They were less desperate.  Many only had an understanding of the disease in the abstract.  They were more like the paid staff who could leave work and go home to a normal life without someone around to remind them of multiple sclerosis.

And they found the medical profession supported this approach.  Medical people found it easier to deal with other professionals and with prestigious executives from leading firms on the MS boards.  Nobody really wants whiny, overwrought patients or their families adding to the noise level.

But what they forgot was the determination of these caring people.  They forgot the leadership that these people gave to driving the society forward.  We have found that the paid staff can write about momentum but they often lack the leadership skills to create it.

There will be more on this subject.

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