Welcome! This blog contains research, information on lifestyle, nutrition, dietary supplements 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 15 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

Friday, November 18, 2016

Dr. Zamboni interview on Brave Dreams Trial

Dr. Paolo Zamboni is presenting at the Veith Symposium in New York City today.  He sat down for a live Facebook chat with CCSVI Alliance President, Sharon Richardson.   Here are some of the main talking points I jotted down while watching from my kitchen in California.  The video is available to all here:  https://www.facebook.com/CCSVI-Alliance-125892427429118/

It was good to hear and see these two, and their conversation was wonderful.  Sharon has become a well-versed advocate for those with MS.  The fact that she has MS and understands all of the medical terminology and scientific talk-- and takes it upon herself to travel and document this research--is so helpful for all of the laypeople around the world who wish to understand more about CCSVI research.  Thank you, Sharon!!!  You are a dynamo and we all appreciate you!!!  Thanks also to Florence D'Eon for all of her technological and photographic support.  She also has MS and travels on her own to document the science.  Thank you!!

The Brave Dreams trial is a scientifically robust, double-blinded, placebo controlled trial.  It is currently embargoed--meaning we will not know specific results until it is published in a peer-reviewed journal.  Because it is an interdisciplinary study involving neurologists, interventionalists, vascular and imaging specialists, it is going to take a lot of work to get the results vetted by all, and written up in a manuscript everyone agrees to.  Dr. Zamboni stressed that this is essential, in order to have the science taken seriously and published.

What we do know--this was a six center study throughout Italy.  200 subjects started the year long study, 125 people completed it.  They were mostly RRMS and some SPMS  (under 5.5 EDSS) who were investigated, treated (or not if they were in the sham control) and followed a year through completion of this study.  There were primary endpoints, which Dr. Zamboni explained were OBJECTIVE.  This means that these changes were not subjective, or based on patient's feelings, but were measurable by approved medical instrumentation.  These objective measurements included volume of bladder, visual acuity, timed walking and manual dexterity, as well as MRI lesion consideration.  All of these measurements were looked and compared during 3, 6, 9, and year intervals.  The first paper will report on these primary endpoints after treatment, and will hopefully be available next June.

As Dr. Zamboni stressed---this type of trial is unique and should become the gold standard for MS treatments.   NO drug trial has ever been weighted and measured in such a precise, objective way.

To the patients, Dr. Zamboni asked us all to "be patient".  There will be more coming on how CCSVI treatment improves perfusion and cerebrospinal flow, as well as how it helps with depression, memory, fatigue, and cognition.  This research is more "like an opera"--it is going to take cross-disciplinary collaboration and cooperation.  Across disciplines and countries.

For those who are out of wait---this news is frustrating.  For many of us, the time it is taking to gain scientific acceptance is far too long.  And as many have stated--how can having slowed venous drainage be good for the brain?  Shouldn't CCSVI be repaired?

There are other CCSVI treatment trials happening now or planned for the future at Alfred Hospital in Australia, in Canada, and through the ISNVD.   As to the comment that CCSVI science is "dead"-- many scientists agree that the study is just beginning.  To claim that vascular MS research is over, simply because this is taking time and hard work, is absurd.

The 2017 ISNVD conference will be in Taormina, Italy in May.  It will focus on the microbleeds and inflammation in the brain,  neurodegenrative disease, stroke, the heart brain connection and vascular interventions.  It will bring together international imaging specialists, neurologists and vascular specialists.  This will be a meeting of hearts and brains.  Patients, caregivers and laypeople are invited to attend.
link to ISNVD 2017

Onward,
Joan


6 comments:

  1. Thank You again Joan, in a way I hope this study comes out after the UBC study here in Canada. The study in Canada is done so we wait for results now, at least according to a gal that is in the study.

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    1. Hi Angela--There will be many more studies coming--the Alfred Hospital (Australia) study, and one from the ISNVD as well as a couple Canadian trials. But as we've all learned, venoplasty is only one part of this equation. Maintaining venous flow will involve after treatment lifestyle adjustments, as well. We'll get there!

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  2. Thank again Joan for summarizing and framing the interview in the scientific context that it has been developed in.
    Zamboni talks about a number of protocols and tools to measure objectively and although it is frustrating to wait so long, it is very exciting, as the research seems to promise to make these tools available. Like the NASA experiment, there are a lot of fuzzy and ambiguous metrics that Zamboni and team are addressing. In the meantime, keeping at the vascular healthy lifestyle, cheers, job

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    1. Agree, Job---the waiting is very frustrating, as time is brain for those with MS today. And developing the precise tools and metrics takes time and interdisciplinary cooperation. But addressing the vascular componant of MS is a tool everyone can use, for free, for themselves, right now. So glad this message has helped you. Spread the good news! :)

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    2. This is great news. Dr Zamboni continues to be "true" hope for scientific research on the vascular components of MS. He has endured controversy, and overcome delays, in order to lessen the suffering for those living with MS, and possibly other neurological conditions. Dr Zamboni searched, and believed, that science is not as limited as many others choose and practice. I feel more confident with Joan, Sharon, Dr Zamboni, and the others who believe in CCSVI, for being on our side. Sincerely, thank you.

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  3. Good luck always from me here in UK Thank you always for doing so much work also .

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