Hi, this is Marie Rhodes writing this note. Joan asked me to be co admin of this page about a year ago and I have written one other note, but have been so busy writing the book that I have not been able to participate here much at all. I hope to change that as the fevered pitch of writing fades away, though I still have a few weeks to go before the index is done and final edits are on their way; but I've missed the sense of community and participation . Writing is a very long and lonely endeavor.
Funnily, I had no idea--being still so busy with edits-- that McFarland had put the book on Amazon for presale. I hadn't even approved the cover! I started getting congratulations emails and calls and it was a shock. But, people have written asking about the book so here is the scoop:
The book has a FB page that is in development (FB is hard for me and I have to get help from Sammyjo) that is called Chronic Cerebrospinal Venous Insufficiency Book--I'll friend anyone who wants to be a book friend there. I should be able to connect with book friends at that site once it works properly.
I have been setting up a webpage for the book at ccsvibook.com. It now has excerpts so you can see what the book is like to read. I included excerpts from Chapter one "The Politics of Change" which discusses our patient activism in pushing for this model to be fully investigated immediately....
...and an excerpt from the middle of chapter 4 "MS as a Venous Disease" which is a more scientific chapter that explains with references the scientific argument FOR CCSVI. These two excerpts give an idea of the flavor of the book.
In writing this book I hoped to accomplish several things. First patient education. I am a nurse and giving patients the information they need to successfully negotiate their healthcare needs is sort of the prime directive for nurses. I wanted to make sure people understood enough to be able participate in discussion with their personal doctors before embarking on some venture to seek treatment. For example, stents have risks--people should know something about that so they can ask hard questions of any practitioner offering treatment so they can get what they need from them to make an informed decision. Reading the book should give people an excellent starting place for discussion with their personal physician because a number of concerns to be aware of are explained.
Second I wanted to get the science out there. Dr Zamboni's theory about how venous insufficiency might be the key to MS is a perfectly reasonable model that is well supported when you look for clues in the standard MS literature. It seems to me to be at least as well supported as the autoimmune theory. I offer enough reference that the reader may feel that way too.
Third I wanted to make sure everyone understands the difficulty this is going to have getting from where we are today to where we need to be to know that liberation style treatments are effective. People need to understand this is not a sure bet--not yet. The best practices are not known yet, how to identify CCSVI reliably is only partly understood, and why some normal people can have stenosis but not MS is just beginning to be understood (it appears it is about blood flow and the amount that is moved through) It is going to take years before this is cleared up and defined on these levels--we need the freedom to get those years of study.
Lastly I wanted to be part of the solution. I am tired of waiting for someone else to fix MS. Is is not happening and the pound of flesh MS has taken from me has made me a willing participant in this effort to demand that this is FAIRLY evaluated now. "Fairly" means it is not shot down with poorly designed studies. There are a lot of prominent MS researchers that really, honestly will not believe this model is even possible because they are so certain that autoimmunity is the problem. These individuals are only too willing to shoot CCSVI down after a mere two years of focused study when they give the autoimmune theory a pass even though after 60 years of effort they have failed to identify the specific autoimmune cell that they believe MUST be causing MS.
These dynamics mean we can't be passive. There is no commercial interest with teams of administrators and advertisers pushing this and supporting research with press release spin as it goes through the process of discovery where one week things may seem great and the next things seem less certain. It is up to us to counteract any push from traditional practitioners to get back to business as usual and abandon CCSVI before it is thoroughly understood. WE have to understand what it is we are talking about--including the problems CCSVI researchers are having in getting consistent results before they understand what they will one day know--so we will be ready to support the work all the way to the conclusion. Venous issues were partly studied then abandoned in the 50's because they didn't have the tools they needed to really understand what was happening with MS patients blood flow and they lost the drive to keep working at it. We can't let that happen again.
My sincere wish is that this book is helpful on many levels.
at any rate the book is available for pre order on Amazon and it comes in a digital form for about 12 or 13 dollars (not sure which) as well as soft cover for $35. It'll be out, they say, April 19. I am giving 10% of my royalty to CCSVI Alliance but here is the wierd thing-digital books give me a bigger percentage so even though they cost less I still give the same amount to CCSVI Alliance! Feel free to get the digital one if you like. I am all for cheap myself (though you can't pass around a digital copy--because of the copyrights it is not something that can be sent in email --it is protected)
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