… require extraordinary evidence. That is the heading of a “Message from the Editor” in Annals of Neurology published online in April 2011. It comments on a paper demonstrating the absence of retroviral particles in CSF of patients with chronic fatigue syndrome while criticizes the role of publishers (and researchers) paying (too much) attention to breakthrough discoveries while they don’t care much about those same discoveries when they fail to be replicated. It also points out the role of mainstream media and the internet in amplifying these “extraordinary claims” and highlight the need of humble statements and careful replication before attracting mainstream media focus on those claims. They, as we did, compare the case with that of the CCSVI (the other way, though) and remember us the necessary slowness of science: ” […] as journal editors we have a responsibility to do everything possible to insure that data appearing in our pages will stand the test of time.” The only thing i don’t like in that necessary message is that it will remain within the limits of Annals of Neurology readers. That is the battle clinicians and researchers need to win. The one outside the official means. If we fail to convey this message out of our limits we will lose the battle against bad, harmful, attractive science. So the scientific community has to grow public but grow around our own environments, both our clinics and, more importantly, our communities.
Chronic cerebrospinal venous insufficiency is a novel hypothesis, proposed for the first time by Dr Paolo Zamboni, to try to explain the elusive cause of multiple sclerosis (MS). Briefly, this hypothesis proposes that the autoimmune attack against oligodendrocytes and the demyelination process, hallmarks of MS pathology, are caused by an excessive deposition of iron around small veins in the brain. This hypothesis is proposed after having found that venous blood flow may be altered in MS patients and, attending to Dr Zamboni’s studies, that yugular and azigos veins show an increased frequency of stenosis compared to normal controls. This hypothesis has never been accepted for a number of reasons but what matters most to me are the consequences of the disregard with which the neurological community has received this hypothesis. Nature Journal has recently published a paper about the power of social networks to movilize patients and its potential to divert funding to studies or procedures demanded by patients. The example to illustrate the power of social networks is Zamboni’s CCSVI. In Canada, the attention paid by the mainstream media to this condition and to Dr Zamboni has turned into many patients claiming for the treatment of their vein stenoses, a procedure called, not randomly, “the liberation procedure”. But not always new healers deserve and receive attention by the media. But the context with this story is perfect…for both mainstream media and patients. Dr Zamboni’s wife suffers MS. He is a vascular surgeon, attending to his Pubmed profile, a reputed one in the field of varicose veins surgery, but he has now focused on trying to help his wife (and others) studying MS from his vascular surgeon perspective. That means he is an outsider. Someone not familiar for the “MS stablishment”. He proposes a radically different approach in a pretty