disease, and information science: the case of multiple sclerosis
by Francesca Lombardo and Francisco Tobacco
Today, despite all the talk that makes science, is common in our country an alarming scientific illiteracy that prevents those who produce information and the reader, to discern those opinions based on unsubstantiated, to decide on issues involving the health and then the living.
It's like if you miss a grammar for reading phenomena, to deal with understanding and interpreting them.
The case that we put before you is an amazing scientific discovery that involves Professor Paolo Zamboni, a brilliant surgeon vascular University of Ferrara, who proposed, in collaboration with Dr. Fabrizio Salvi, Bellaria Hospital in Bologna, a radically alternative approach to the understanding, diagnosis and treatment of multiple sclerosis.
At a conference in London in 2006 explains his "big idea": the plaques of multiple sclerosis are, in the mechanism of their formation, similar to chronic leg ulcers that he knows and on whose formation mechanism has worked and published a lot, an inflammation caused by chronic venous insufficiency, a reflux or pooling of blood, on his way back from the brain to the heart.
casual observer would have thought that reflux by performing a normal carotid Doppler to his wife, the bearer of Multiple Sclerosis. Zamboni said the editing of scientific publications related to observations made on 65 patients with multiple sclerosis have all had a series of indicators ultrasound signs of a reflux / stagnation in the cerebrospinal venous circulation. 235 controls would have been much less.
The study showed that these anomalies, which affect blood flow, present themselves more frequently in patients with multiple sclerosis. The cerebro spinal chronic venous insufficiency (CCSVI), as is defined by Zamboni, would increase by 43 times the risk of developing the disease.
The discovery subsequently found definitive international recognition Friday, September 4, 2009 at the World Congress of venous disease in Monaco, UIP 50.
In recent months are not talking about more of those involved in multiple sclerosis. Is it true? It will end multiple sclerosis caused by venous insufficiency chronic cerebrospinal (CCSVI) rather than "just" an autoimmune disease?
Perhaps the current scientific assumptions will be modified. Meanwhile, to confirm the overlap between CCSVI and multiple sclerosis, the Jacobs Neurological Institute in Buffalo, New York, decided to conduct a study of 1,100 patients with multiple sclerosis and 600 volunteers. In Emilia Romagna, and in another fifteen centers located in different regions, should soon begin testing and clinical diagnostics.
If, as now seems established, should prove this link, a large proportion of patients could have substantial benefits from a small mini-invasive surgery of angioplasty dilated veins that can be done as an outpatient. The curative treatment of CCSVI could therefore improve the condition of patients with multiple sclerosis.
What was the reaction of the scientific community and associations with multiple sclerosis in Italy, Canada and the United States? Essentially a cold attitude of their door-entry. It should be recognized, however, that powerful interests are at stake of the large pharmaceutical companies, which have invested billions of dollars in the development of drug treatments for multiple sclerosis.
As for the reaction of the neurologists in this "invasion of the field," Professor Dake include Stanford University, which the Wall Street Journal, in a recent interview on CCSVI, states: "The neurologists can not accept that he always had the solution under the eyes."
same time, the Italian media have shown a scientific illiteracy that has reached the alert level. The paucity of good information has left space niches that are quickly occupied by pseudoscience, superstition, irrationality. Under these conditions it is difficult to establish a proper relationship between scientific and medical innovation, institutional framework and political and democratic control of scientific knowledge.
Little information was correct, unfortunately, the same AISM (Italian Multiple Sclerosis Association) to its members. In September 2010, Professor. Zamboni has officially severed from the trial AISM that fail to meet its Protocol, would alter data and results. For this group of people with MS Multiple together with their families, friends, acquaintances, has given rise to an extraordinary partnership, using the opportunity provided by the network.
Clearly, the constant need of accurate and free for people affected by CCSVI, clarifying the correlations of the latter with multiple sclerosis. To accomplish this task, the Association CCSVI born in Multiple Sclerosis.
All through the new association, www.ccsvi-sm.org, born in April 2010, addressed to the relevant institutions with a unanimous message that says: "Listen, we are many." The group is open to all, and cuts off the loneliness, life partner of many people who, either out of shyness, either by nature, are imploding and the pain does not come out easily.
Sherlock Holmes once told Watson: "You see, yes, but not observed" Helen Keller and, likewise, said to a friend: "How tragic to have sight, but do not see a lack of vision. " The philosopher David Naugle points out that if you approach only the slightest indication or a single detail, you can lose the key to solving the problem.
Paolo Zamboni, had the privilege to "have vision" and to observe what had always been there, something simple and striking, yet invisible to all others. He came, saw, had an intuition. We hope that when his studies have convinced the skeptics and became believers today, we will join with all the Zamboni professor shouted, "Eureka!"
Meanwhile, many patients, encouraged by the incredibly positive results, with the classic journeys of hope to address in Italy and abroad and its exorbitant costs, the urgency of diagnosis and treatment. The new association has repeatedly called for, with official meetings, the support of the National Health Service, but the times are always postponed.
It 'important that the NHS are responsible for the protection of interests so vital to its citizens with CCSVI.
Personally (I'm Francesca, one of the two writers) through dr. Gabriele Jordan of Acerra (NA) for the diagnosis and to Dr. Thomas Lupattelli of Reggio Emilia for the angioplasty, I have noted significant improvements in my condition of life. But to achieve these two doctors, I had to face arduous journey for us with the chronic fatigue symptoms of MS. 'S why everyone should have the opportunity to have doctors trained and reliable as close as possible to their homes and with the guarantee of economic support from the NHS.
Marche Region has been one of the first to take concrete action to go into port for this project but red tape and not, for the failure even to this region, a pioneer of concrete steps, to offer the best in you.
Even our history, that will be remembered as a historic moment for medicine and sociology, seem appropriate words Scopenhauer From the beginning we have taken as our motto: "Truth goes through three steps: the first is mocked and ridiculed, then it is fiercely opposed, was finally accepted as an obvious truism."
Tobacco Francis, President National Association CCSVI in multiple sclerosis (www.ccsvi-sm.org)
Francesca Lombardo, a member of the association
The Original text is here.
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