Marie and Joan,
I realise that you will feel that I am against you. Instead I am trying to convince you to stick within science in the strict sense.
I used Marie's exact words in my post. These words must not require Joan's explanation 'Mark----Marie is right. She means cerebral veins.'
Marie's book is titled:
'CCSVI as the Cause of Multiple Sclerosis: The Science Behind the Controversial Theory.
The cause of MS is not known, this means Marie's title has not been fully demonstated by research, making it unscientific. Joan says: 'That's the 170 years of research she refers to...MS as a venocentric disease'. True, MS lesions are venocentric, but this does not mean the cause of MS are venous problems.
Research indicates that MS lesions are not the first stage of MS (reseach - vitamin D, MS genes, astrocyte death to understand this). This calls into question the whole 'auto-immunity' theory. However just because the auto-immunity is not 'the cause of MS' does not mean that auto-immunity is not part of the etiology of MS.
Prof Zamboni's says "CCSVI has every right to be included in the idea of multifactor accepted by all scientists," I agree with Prof Z that the causes of MS are multifactorial. This is accepted by most MS scientists, probably not all.
We are insisting that the commercial forces shall not take over the debate to quietly put CCSVI aside.
I agree that commerical forces should not prevent the safe treatment of CCSVI syndrome using balloon venoplasty (PTA). This my goal, and not arguing about what causes MS.
We demand that this new model be evaluated fairly and with all urgency now.
There is no 'new model' for the cause of MS from Prof Zamboni. Please read his exact words (recent abstract below). The 'new model' for the cause of MS appears to be an invention of some pwMS and their carers. Prof Zamboni exact words simply are:
"Chronic cerebrospinal venous insufficiency (CCSVI) is a syndrome characterized by stenosies of the internal jugular and/or azygous veins (IJVs-AZ) with opening of collaterals and insufficient drainage"
I urge you, Marie and Joan, along with all caregivers and CCSVI advocates to keep within the science as published by Prof Zamboni. Extending his thoughts may make CCSVI more interesting but it really does make Prof Zamboni's position more difficult to demonstrate scientifically.
I repeat that the only question patients need to ask to those opposing us, is:
"Does treating CCSVI syndrome (using balloon venoplasty in patients with MS for 10 years or more) appear to help progression of MS and some symptoms of MS ??"
Recent abstact/press release:
Zamboni P, and Galeotti R: The chronic cerebrospinal venous insufficiency syndrome. Phlebology. 2010 Dec;25(6):269-79. PMID 21106999, doi:10.1258/phleb.2010.009083.
Vascular Disease Centre, Interventional Radiology Unit, University of Ferrara, 44100 Ferrara
Chronic cerebrospinal venous insufficiency (CCSVI) is a syndrome characterized by stenosies of the internal jugular and/or azygous veins (IJVs-AZ) with opening of collaterals and insufficient drainage proved by reduced cerebral blood flow and increased mean transit time in cerebral MRI perfusional study. The present review is aimed to give a comprehensive overview of the actual status of the art of the diagnosis and treatment of this condition. As far as the origin of venous narrowing is concerned, phlebographic studies of the IJVs and AZ systems demonstrated that venous stenoses were likely to be truncular venous malformations; mostly, they are intraluminal defects such as malformed valve, septa webs. CCSVI condition has been found to be strongly associated with multiple sclerosis (MS), a disabling neurodegenerative and demyelinating disease considered autoimmune in nature. In several epidemiological observations performed at different latitudes on patients with different genetic backgrounds, the prevalence of CCSVI in MS ranges from 56% to 100%. To the contrary, by using venous MR and/or different Doppler protocols, CCSVI was not detected with the same prevalence. Two pilot studies demonstrated the safety and feasibility in Day Surgery of the endovascular treatment of CCSVI by means of balloon angioplasty (PTA). It determines a significant reduction of postoperative venous pressure. Restenosis rate was found out elevated in the IJVs, but negligible in the AZ. However, PTA seems to positively influence clinical and QoL parameters of the associated MS and warrants further randomized control trials.
Zamboni's Press Release (their translation):
Some clarification of inaccurate information disseminated in the media, in particular the April references to the study of Dr. Zivadinov published in Neurology.
CCSVI has every right to be considered among the causative factors of MS, having been seen in 60% of pediatric forms of MS
The published data had already been released in 2010 and then considered unsupported data.
The study conducted by researchers at the University of Buffalo and published in Neurology, the journal of the American Academy of Neurology April 13, 2011. ( www.neurology.org
), the relationship between CCSVI and MS, is attracting a lot of noise, but the news needs to be clarified.
And that is that the study disproves the theory of the relationship between MS and CCSVI, emphasizing the fact that MS is not a cause but a consequence of MS.
The study published in Neurology, confirms the results of last spring, in fact the study and the data contained in it are the same as advertised by a press release in spring 2010 and defined data unsupported.
The data coincide with those presented April 14 at the 2010 Live Web Forum in Toronto, organized by a National MS Society and attended by Prof Paolo Zamboni, director of the Vascular Disease Center, University of Ferrara and discoverer of CSSVI, Dr .Zivadinov Robert University of Buffalo, Dr. Andrew Common, radiologist at St. Michael's Hospital University of Toronto, and Dr.Aaron Miller, professor of Neurology and Director of the MS Center at Mount Sinai in New York. During the live web forum, broadcast live on 5 continents by doctors and patients, and these four experts in the room that scientists had considered the study of Buffalo as a confirmatory study, data analysis and indeed led to state CCSVI that was also a negative prognostic factor in the course of MS.
The data emerging from the study by Professor Zivadinov, does not detract from the work of Professor Zamboni, but contrary to what is erroneously reported by other media sources. The data instead strongly supports that CCSVI has every right to be included in the idea of multifactor accepted by all scientists, including the causative factor of MS having found in nearly 60% of pediatric forms of MS and in almost 40% of people with clinically isolated syndrome (CIS). Obviously it is difficult to consider the CCSVI a consequence of MS even when it is presents in pediatric MS.
Mark Walker - Oxfordshire, England. Retired Pharmacist. 12 years of study around MS.
Mark's CCSVI Comment: