BLOGNAME: LOUDER THAN WORDS

An informal, stream-of-consciousness reflection on business ideas, events and issues in modern business, modern life and with some specifics to the web-software industry by Paul Tomori, Internet Entrepreneur

Multiple Sclerosis Potential Treatment - Thinking Outside The Box By Paul Tomori Monday, November 23, 2009 at 18:08:52 (EST) Anyone who knows me well knows the story of my mom, Libby, who slipped the surly bonds of this earth 6 years ago from the effects of Multiple Sclerosis. Having first been diagnosed in 1977 shortly after the death of my father, my siblings and I watched our dear vibrant strong mom enter the long slow decline that so many MS sufferers endure. Years of treatments and hospital stays culminated in her being nearly completely incapacitated by this dreadful disease. From the outset, it was a foregone conclusion in the medical community that MS is an auto-immunity disease whereby certain fighter cells turn against one's own body and devastate the myelin sheath, the coating that protects all nerve fibers in the brain and spinal cord. You can imagine my shock when the Globe and Mail arrived on Saturday morning with a blazing headline about a possible treatment and even cure for MS, one that defies all previous conceptions of the disease. Paolo Zamboni, an Italian vascular surgeon, himself disabled by another neurological problem, discovered that the known high concentrations of Iron in MS sufferer's brains might have a vascular cause. This excess of Iron was previously considered to be incidental to the disease, the result of Myelin breakdown. It was not considered to be a significant factor and certainly not a cause of the disease. As to why the Iron was found in higher concentrations, he theorized that for some unknown reason, blood was not draining at an adequate rate in MS sufferers from the cranial region of the body, thus keeping toxins like Iron from properly flushing through to areas of the body where such agents could either be metabolized, excreted or otherwise dispensed with. After much thought, and no doubt, drawing on his own scientific expertise, Dr. Zamboni postulated a "plumbing" problem in the human bodies of MS sufferers. He considered the radical possibility of a vascular defect. This is a radical paradigm shift to all previous "assumptions". On testing, Mr. Zamboni discovered that in almost all cases, the jugular veins and other veins in MS patients had all been constricted through the build up of plaque and other strictures. How excited he must have been to actually see clear anomalies that supported his speculation of a "drainage" problem. Using a similar technique to the angioplasty balloons that are inserted to open up clogged arteries in heart disease patients, Dr. Zamboni's subjects, all noticed a near immediate improvement in their MS attacks. MRI scans validated the patient's statements showing a slow down or complete stoppage in the number of brain lesions (where myelin is attacked). Stunning. MS may be treatable with an afternoon visit to a vascular specialist. They are calling the treatment the "Liberation Treatment", for patently obvious reasons. Of course, there are reasons to be cautionary about these early findings, but what I have witnessed on the message boards of the news channels is shocking. While many many people are applauding Dr. Zamboni, others are calling him a charlatan, a snake oil salesman. They discredit the lack of scientific validation from the community at large. And they hold the newspaper and CTV accountable for publishing their reports without intense investigation first completed. They say the report gives people "false hope". The MS Society has been less vitriolic, but they are quite reserved in their response and I will address why that is a good thing below. But as for all the negativity, I say - GET A LIFE ALL NAYSAYERS. You are all missing the point of what is going on here. First, yes, there have been other proposed causes of MS in the past, Mercury in amalgam fillings (my mom's mouth was filled with such fillings and we saw at least correlation at that time), but that theory proved to not be validated. But so what? Doesn't all good science start with a hunch before it gets properly validated (or invalidated?!)?! And yes, does a proper scientific study need to be undertaken? Of course, and it already is underway. And are the findings preliminary? Of course! But what of it?! Can you imagine trying to contain a story like this before it is fully validated? There are 65 MS sufferers in Italy who have all been positively affected by the treatment. One even said "I don't know what it is to be ill with MS any more". And really, is Zamboni a snake oil salesman? If so, what exactly is he selling? The technique and treatment is rudimentary and does not even require general anesthetic. He may stand to profit from book tours and perhaps a Nobel prize some day, but that will only happen IF his treatment proves itself out in repeat studies. And it seems unlikely he is presently motivated by money (though, is the motivation of money such a bad thing anyway?!) And of this concept of newspapers giving "false hope". Ok, that is just a contradiction of terms here. False hope is telling your 18 year old 5 foot 7 son that he if he eats his veggies, he might just grow to be 7 feet tall one day. What this new medical development gives is not "false hope" - it gives just plain old-fashioned "hope".... hope that the doctor really is on to something. When you're an MS sufferer or a family member or friend of an MS sufferer, just about the only thing you have sometimes is HOPE. Zamboni used gumshoe research poring over dusty books, developing a hunch, mixing his hunch with his own expertise about vascular science, then employing real diagnostic tools to observe a condition that encouraged his speculations AND he then proposed and tried an actual medical technique that appears to have had some long-term positive affect on real sufferers. From what I have gathered, he was not paid to do any of this. He did it out of love for his wife who, with MS, was his first subject! Isn't that a perfectly reasonable way for how new developments should be made? Or was everyone thinking that there must always be millions of dollars behind the research and teams of collaborators and that there must be yearly grants to young scientists to discover cures? Such methods are useful, but they are NOT requisite. Maybe the people at the MS Society are feeling a bit like they missed their opportunity for glory? But if so, they should not. And, certainly, people should not stop giving to MS research. While it may be possible that a lot of people who make a lot of money from MS research might be some of the bigger naysayers, I think they will get over it. For now, a cautious optimism on their part that a treatment has been found is the correct stance to take. They should also fund the validation (or invalidation) of Zamboni ASAP. He is the brightest light to shine on the MS community in years... Most advances have been in the treatment of symptoms, not in root causes. As to criticisms over Zamboni's failure to obtain proper study results, these statements are annoyingly dumb. How can one man with a theory (hunch) afford to run a large enough test of his theory and why would he want to until he had some basic preliminary validation of his theory? Zamboni did the right thing. It has shown some big promise and now it must be validated. Let's get on with it. Galileo, the famous 17th century astronomer suggested that the earth circled the sun rather than the other way around. He was jailed for that suggestion. Of course, everyone knows now that he was right. He thought outside the box... or as I like to say perhaps he never had a box to have to think outside of in the first place! So, let's all keep an open (i.e. active) mind here. If the science fails to validate Zamboni's diagnosis and treatment of the problem, that's ok. Maybe the next researcher will consider an out of the box solution based on Zamboni's inspiration and maybe THAT researcher will be the one. Or maybe, Zamboni's procedure will work for a percentage of MS sufferers such that MS will actually be shown to be more than one disease. Whatever the case, there is some promise here. If Zamboni's treatment works for even a small percentage of current and potential future sufferers, it will be miraculous. I am filled with hope. True hope. Return To Blog Index