Category: New

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.

– 30 –

Complaints, comments, criticisms and compliments can be sent to   [email protected]

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.

– 30 –

Complaints, comments, criticisms and compliments can be sent to   [email protected]