14 May 2011

Liberation Treatment becomes Liberation War

I don't have a lot to say today as the news reports say it themselves.
A revolutionary treatment for MS which is simple and is showing very clear positive outcomes.
Patient demands for access to the treatment clashing with demands from the medical establishment for more data.

Now, I won't argue against the need for better data and proper clinical trials but how long are people going to have to wait for relief from a chronic, degenerative disease?

But I know that people are going to tell me to hold on. They're going to say this is a new idea and is going to take years of testing. That we shouldn't put people at risk with something that has just come out.

And I'll answer them with the real news behind this story, that behind all the good news in this story is a piece of really sickening news. The sad part of this news is that it's not new.

We hear lots about the a Dr. Zamboni from Italy and his pioneering work in this 'new' therapy for multiple sclerosis by treating Chronic Cerebrospinal Venous Insufficiency or CCSVI with angioplasty, but there are a few names missing.

Professor Eduard von Rindfleisch who proposed a vascular cause for MS in 1863.
Dr. Tracy Jackson Putnam who also proposed a vascular cause for MS in the 1930s, and Dr. Franz Schelling. 

In 1973, Dr. Schelling began investigating  the causes and consequences of the enormous individual differences in the widths of the venous outlets of the human skull. The results of this study appeared, in 1978, in the official organ of the German-speaking Anatomical Societies, the "Anatomischer Anzeiger".

Schelling's 1981 discovery, at the Hospital for Nervous Diseases in Salzburg, of a striking widening of the main venous passageways through the skulls in victims of multiple sclerosis were to occupy his thoughts through the following decades. And in putting together, bit by bit, all the observations on the venous involvement in the emergence of the specific, and, in particular, cerebral lesions of multiple sclerosis, he was able to recognize their causes.

The 1981 discovery is over thirty years old but was never examined until Paolo Zamboni started studying it in 2002 and connecting his own work looking at MS as a vascular issue with Dr. Schelling's years of background studies.

According to Dr. Schelling he approached hospitals, neurosurgeons, MS societies and was never allowed to carry out his research. All told him the same thing; MS is an immune disorder, not a vascular disorder. He says, "I could never have imagined that so many doctors might have so little interest in serious scientific work and clear logical reasoning."

Had this research been carried out when the theory was first raised it would possibly have saved millions of MS sufferers including my own aunt who has had MS for about thirty years.

Let's make sure that we in the SCI community watch the medical world with informed minds and start organizing now for our War of Liberation so we don't have to wait a hundred years. The MS people have shown clearly that our voices do have an impact.

Watch the CTV news report: The Liberation War.

Read the story in the Globe and MailPatients flex muscle in ‘war’ over MS treatment

PS. People often tell me that I'm a little too dramatic so before people accuse me of being dramatic again by using the today's title, I'll pin it on CTV News, because it's theirs.

1 comment:

  1. We have a lot to learn from this story about MS. We need to investigate SCI research aggressively!