Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.The posts are searchable---simply type in your topic of interest in the search box at the top left.Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.To learn how this journey began, read my first post from August, 2009. Be well! Joan
Wednesday, December 1, 2010
Press Release from Fondazione Hilarescere
December 1, 2010 at 1:40pm
Dr. Zamboni has stepped down as lead investigator from the Italian MS Society's (AISM) proposed epidemiological study of CCSVI. He has stated many times that this group is not following his methodology of testing.
Here is a new press release on this topic---
Who is Responsible for the current problems?
November 20, 2010
The Hilarescere Foundation and its scientific committee chaired by Prof. Paolo Zamboni have always clearly warned that the diagnosis and therapy of CCSVI cannot be improvised. The papers published have underscored the extreme importance of the learning curve required to manage both aspects in an ethically sound manner.
This very seriousness that must be guaranteed to patients both scientifically and in terms of the methodology adopted has led Prof. Zamboni and Dr. Salvi to make painful choices, among which the decision to resign from the FISM/AISM study after having devoted time to it and made a series of proposals that have gone unheeded because said study has proven to be inadequate to achieve the set goal. It is a study that is all but a comparison with the "Zamboni method", since its basic principles have been neglected. All too often and misleadingly the FISM/AISM epidemiological study is referred to as a study promoted by Prof. Zamboni. However, for the aforementioned reasons he has clearly and consistently kept a due distance from it.
Great concern has been clearly expressed in the Foundation's website and it has been stressed in every interview that CCSVI interventions are spreading and that these do not follow approved protocols that ethically ensure patient safety. The Foundation rejects clinical activities that prey on the desperation of patients to generate forms of medical tourism that offer absolutely no guarantee of quality to patients. Unfortunately, it is obvious that all this leads to extremely painful situations. We cannot offend people's suffering by exploiting it. It is absolutely shameful. This is still the time of studies and research; diagnosis and treatment must be managed within this framework with all the necessary guarantees. When carried out correctly, the treatment is mini-invasive and has an excellent level of safety as proven by many international experiences and articles.
Anything outside of this framework is wrong. But it must also serve as a stern warning for all those who do not heed the legitimate expectations of patients frustrating them with slow, all too slow studies that are blatantly inadequate.
Francesca Rossini - Laboratorio delle Parole
Tel. 051-273861 – mobile 331-6752354 and 335-5411331 firstname.lastname@example.org