Quote:
Originally Posted by marcstck
I just posted this to my blog, in response to the massive waves of misinformation and misunderstanding that are flooding the MS forums and chat rooms regarding the CCSVI theory.
All comments are welcome.
|
Marc, thank you for the information you've posted here and elsewhere. I very recently stumbled upon your Wheelchair Kamikaze blog, rather it stumbled across me via a Google MS alert, and I've since subscribed. You are an extremely eloquent writer, among other obvious talents.
Although I am also extremely excited about the potential relevance of CCSVI and MS, I agree that caution and patience are in order to validate Dr. Zamboni's research and claims. It's encouraging that quite a bit of action regarding further study and validation seems to be taking place sooner rather than later. One of these is Dr. Zivadinov's Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and related Diseases study taking place through the University of Buffalo and Buffalo Neuroimaging Analysis Center. I believe they're seeking 1,100 MSers and 600 non-MSers as a control group for the study, which can be applied for on-line. If selected, all testing procedures are paid for by BNAC, although there is no financial compensation for travel, lodging and related expenses. I did fill out the on-line application, and would gladly pay my way, but was dismayed to read that no Doppler or MRV reports will be given to participants or to their physicians. Yet this is precisely what individual participants will desire to know. For all but local or nearby volunteers, I'm afraid once it becomes clear to traveling participants that they'll get no returns on their expenditure other than perhaps a thank you and the knowledge they've helped move this study along, there will be many who will not follow through if accepted, which could potentially greatly delay the study. I personally would not be able to justify the expense of the trip if this is to be the case. If I've understood this "no results will be given to participants or their physicians" correctly, hopefully they will reconsider this. If anyone has any further information or insights, I'd be eager to know of it. Thanks in advance.