Well put Cheer--thanks.
I am rarely here because I am busy and things like this thread are a time sink, but I do want to clarify a few things.
First, my op-ed was intended as a comment on how patient involvement has changed the current discussion. It wasn't a dissertation, nor do the rules for such a document apply. It was not written for this audience but for the CCSVI interested community re: a debate that we were having there. it was re-posted here by someone who thought it'd be interesting to some TIMS members.
Second the title of my book "CCSVI as the cause of Multiple sclerosis the science behind the controversial theory" is descriptive of what genre of material is evaluated in the book, it is not a scientific conclusion of course because my book isn't "research" but reference. THIS IS IMPORTANT: THE TITLE IS CHOSEN BY THE PUBLISHER.
I had no say in it at all. FYI Dr Zamboni liked it.
Third, The book was reviewed and multiple drafts were seen and commented on by Simka (did the most) Haacke (also wrote foreword) Zamboni, Dake Hubbard, Burks (neuro and MS researcher--reviewed 2 chapters on immunity and how CCSVI relates to MS research) and very glowingly reviewed when it was in galleys by Dr Schelling.
Will everyone like the book? No of course not. I am making the argument FOR CCSVI... what is the scientific basis for the CCSVI association with MS?---in other words, if you are Dr Schelling or Dr Zamboni what are the references you are looking at and what do they say?
I have an entire chapter on the patient activity to move CCSVI research forward, it is documentation of how the patient population became involved right here on TIMS (in fact, every chapter starts with an italicised quote from a TIMSer... )
also I address what is known what isn't at this point and what might it mean? what about treatment failure, and by the way if a person is thinking about looking for treatment what kinds of things should they be aware of so they can talk to their doctor and what questions do they need to ask to understand what they are getting into?
patients have a right to information so that they can have the discussion with their doctor. Treatment is available everywhere these days--people need to know what to ask
the book is published by the reference division of McFarland. My editor is an established science reference book editor with 10 of her own books still in print. I get a 10% royalty (3 dollars and I send 10% to CCSVI Alliance for research) and spent 5k writing it (research papers are expensive) A book of this type sells about 1k a year. Do the math. This was a two year labor for the benefit of CCSVI....it almost killed me physically...I typed it with dragon speak and one hand.
People here may not recognize that Cheer is president of the charity CCSVI Alliance a 501(3)C charity that raises funds for CCSVI research.
Let me also recognize that Sharon, also from TIMS, has volunteered her energy to be CEO of this charity. That Marc, Mitch Michele and others also gave more energy and life than than they could spare to make it work...
CCSVI Alliance has been recognized by the NMSS for reputable information re: CCSVI and they added a LINK to the CCSVI Alliance website on their CCSVI page so MSers can go to the Alliance for information.
That is a big deal... the NMSS can hardly be called a CCSVI proponent. What does that say about the quality of the work they are doing at CCSVI Alliance?
Not many people have devoted so much of their lives to advance CCSVI information/research as the people mentioned in this post. It is wrong to countenance vilification of people who've devoted so much to a cause that will benefit all of us.
How much of your time and money has been devoted to supporting CCSVI research so there is some legitimate stuff to point to? Almost all of Zivanidov's research money was raised by patients...I attended several fundraisers and gave a lot of money to help.
before you throw rocks at people who are putting everything they've got into that ask yourself if you are adding something positive to the discussion.
Let's lighten up and be part of the solution.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics