Thursday, April 8, 2010

CCSVI Live Web Forum April 14

A few days ago, I received this notice from the National Multiple Sclerosis Society:

On April 14, 12 p.m. ET the National Multiple Sclerosis Society and the American Academy of Neurology (AAN) will hold a live 90-minute Web forum for journalists and the general public on the topic of chronic cerebrospinal venous insufficiency (CCSVI) and what it could mean to people living with multiple sclerosis. The event will cover what is currently known about CCSVI and what yet needs to be determined in order to establish what its relationship to the MS disease process might be and whether surgical intervention can improve the disease course. The live Web forum will feature the following panel:

  • Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy
  • Dr. Robert Zivadinov, Associate Professor of Neurology at the University at Buffalo, State University of New York
  • Dr. Andrew Common, Radiologist in Chief at St. Michaels Hospital, University of Toronto, Ontario, CA
  • Dr. Aaron Miller, Professor of Neurology and Director of the MS Center at Mount Sinai, New York, member of the AAN Board of Directors, Chief Medical Officer of the National MS Society

Register now online (12 p.m. ET April 14) and ensure your system will support the live Web forum player. Questions for the panelists can be submitted online in advance of the live Web forum through Facebook or Twitter, or in real time through the live Web forum player. The recorded webcast will be available online after the event for those who are unable to attend.

For those outside of the United States, please click here to determine the correct time that the event will be taking place in your part of the world. In the "location" box, choose a city on the United States’ East Coast, such as New York or Boston.

Just a few editorial comments, if I may (hey, it's my party and I'll opine if I want to).

I expect this will be a very informative session, and 90 minutes should be enough time to cover most of the issues and questions regarding CCSVI. I urge everyone interested in the topic of CCSVI (and that should be everyone with MS, or who loves someone with MS) to tune in to this webcast, and to participate, if possible, by submitting some intelligent, probing questions to be addressed by the assembled panel.

On nearly all of the MS forums, it's fashionable to bash the NMSS as being too conservative and too beholden to the big pharmaceutical companies to effect any real change in the MS paradigm. The perception is that, for its own self-preservation, the NMSS is averse to funding or promoting any research that threatens traditional MS dogma.

Some of this criticism is deserved, but some is a bit hyperbolic. As with many MS patients, my warning bells go off when I see that the makers of the standard MS pharmaceutical therapies (Big Pharma) are major funders of the National Multiple Sclerosis Society. It certainly does seem that such funding sets the Society up for some major conflict of interest issues when it comes to looking at alternative MS therapies. Yet the NMSS does fund a myriad of research endeavors (click here), many of which are quite forward thinking and have nothing to do with the current crop of MS medicines.

Like many other patients, I was disturbed by the NMSS's initial response to CCSVI, which was barely discernible, and then initially unduly negative. Also like many others, I do feel that the Society should be taking a much more aggressive stance when it comes to funding and initiating research into this potentially paradigm shifting way of looking at the disease.

I must say, though, that by sponsoring this event, which will take place in conjunction with the annual American Academy of Neurology conference (a yearly meeting of the best minds in the neurology, filled with presentations of a wide range of research findings, and considered the most important yearly conference to the neurologic community) the NMSS is doing the MS community a great service. The inclusion of Dr. Zamboni and Dr. Zavadinov, two of the most fervent proponents of CCSVI, indicate that this shouldn't be a smoke and mirrors presentation designed to denigrate the CCSVI theory. I have high hopes that this forum will provide much pertinent information for all of the MS patients currently scrambling to cut through the haze of near hysteria and misinformation that has clouded many of the Internet MS forums regarding CCSVI.

I spoke with one of the higher-ups at the Society's national headquarters last week, and in the course of our conversation she told me quite emotionally that she and everyone she works with would gladly give up their jobs to find the cure for MS. Cynic that I am, I acknowledge that's just what a person in that position should say, but my gut feeling was that the person on the other end of the line was speaking from the heart, and genuinely felt the tremendous burden of the destructive force that MS has on so many good people.

Let's hope that this forum is an indication that the NMSS will increasingly bring to bear its considerable firepower on the investigation of CCSVI, and thus bring us that much closer to the answers we all seek.

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  1. Wow, Thanks for the great news. I won't be able to watch in real time, but I'm really excited to watch it later. I'll get some popcorn and coke and make it a movie night. Hopefully it will bring up more information to discuss with my neurologist next week. Thanks again.

  2. Marc, years ago, in my healthier days, I worked at our local American Cancer Society. I, too, would have gladly given up my job had there suddenly been a cure for cancer. We cannot become so cynical that we doubt the sincerety of those who truly do wish for a cure of this dread disease that afflicts us. I will watch with interest. Unfortunately, I am weak and discouraged and don't know where to begin to go to get help. For right now I am on the sidelines waiting for more information and the courage to follow through.

  3. watch out for 'toxic iron deposits', this event is a good place to put a 'scientific' base under this concept.

  4. I watched the Canadian version of this yesterday - coming to YouTube soon. The head of the Canadian MS Society did a great job of dispelling fears that they are a) beholden to Big Pharma, b) under funding CCSVI research. The Neurologist repeated misinformation about both CCSVI testing and treatment. For example, he stated that venous angioplasty is a new and highly risky treatment with no scientific basis. Having read Dr Sclafani's input on ThisIsMS it is clear to me that it is not true. It is new in terms of a possible treatment for MS, but it has been used to treat other conditions for some time.

    Being told by a neurologist that I should not have a venous malformation corrected is like an electrician saying I can't get my plumbing problem fixed. Frankly it's none of his business. I want the damned sink to drain!

    Anne in Toronto

    P.S. I love your blog Marc. I have gone back and started re-reading the Tao (I have 3 versions). Thanks!

  5. I'm sorry...I just want to say a great big F$&k you to all of them...because I don't believe them...I don't trust them...and it sucks. End of story.

    Debbie D.

  6. Let's all dare to hope. Why not. I know that we are all looking for THE big solution...but maybe...just maybe we might have a real piece in this jigsaw. Fingers well and truly crossed for tomorrow!

  7. Where there is smoke, there is fire. We have all heard the expression and no one can question its validity. Let’s stop debating this CCSVI theory/ treatment/myth, whatever people wish to call it. I have seen over the last few months an incredible range of emotions from desperation by people demanding treatment immediately whether proven or not to ego based anger from the medical community calling this a farce and Zamboni a fraud. Let us all stop debating, criticizing, accusing and ridiculing something that offers hope to hundreds of thousands.
    Until this is proven (and the only thing I’m certain of is that it will be more short-term than long-term like most medical trials) let us at the very least allow this treatment now to those unfortunate ones whose disease has progressed to the point where their quality of life is nil and their options are zero. Let these people at the end of their ropes have the treatment whether proven and not in the hopes that it may give them some relief or at the very least something to look forward to.