In response to a large number of claims we received from persons  with MS, the Italian Multiple Sclerosis Society has gone through the right national authorities asking them to take immediate action with regard to awareness campaign promoted by the "CCSVI in multiple sclerosis  Association” in support of the Brave Dreams study on TV, radio, press and web. This campaign is misleading, and may create serious risks to safety and health of persons with multiple sclerosis.

It is not correct to affirm, as the campaign says, that "in 90% of cases of multiple sclerosis patients have veins of the chest and neck occluded”. The Italian Ministry of Health - with an official document issued on March 4, 2011 - notes that "at present time, no certain relationship between CCSVI and MS [...] is demonstrated" and believes that "today, CCSVI cannot be recognized as a defined pathology ... and its epidemiological relationship with MS is still to be proven". Up to now further studies did not change these statements.

It is not correct to affirm, - rather it may be dangerous, - that "... a simple procedure can stop the disease" as written in the campaign. The  above letter from the Italian Ministry of Health remarks, on the contrary, that "... the vascular procedure cannot be suggested for patients with multiple sclerosis".
This part of the promotional message, especially when seen on television or heard on the radio, may persuade people that the procedure has a decisive effect stopping multiple sclerosis. There is therefore a serious risk that people, relying on that communications, might choose to stop therapies and undergo a worsening of their health condition. In this regard, the Italian Ministry of Health itself, through the cited statement, suggested that "... all should be done in order to protect patients against illusions, speculation and risks of the treatment itself ...".

Finally, it is not correct to claim that joining the campaign (funding with a personal donation) will make it possible to give "free procedures for all”. This cannot happen - even if the procedure would be useful and effective for Multiple Sclerosis - without an official decision of the Ministry of Health.

We also remark that the European Federation Neurological Societies (EFNS), the group of MS experts of the European Neurological Society (ENS), the Executive Committee of the European Research In Multiple Sclerosis Treatment (ECTRIMS), all highlighted - together with the Multiple Sclerosis International Federation (MSIF http://www.msif.org/en/research/msif_on_ccsvi.html) - the high risk and the absence of a scientific basis for the "liberation" procedure in MS patients.

There is a theoretical possibility that the venous drainage of lymphocytes from the brain could cause endothelial changes during the course of MS, perhaps in combination with immunosuppressive therapies.

Italian MS Society is worried about these incorrect messages – which might generate false expectations, exposing persons with MS to illusions and frustrations, and undermine the right to a self- determined quality of life.

Since more than 40 years the Italian MS Society is fighting with the 63,000 persons with MS in Italy, to obtain the right to health, to full life, to an accurate and reliable information, which allows each person with MS to make conscious decisions about the safest and more effective treatments.