NMSS Public Affairs Response to CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

NMSS Public Affairs Response to CCSVI

Postby rssugg » Tue Jul 06, 2010 8:49 am

Thank you for sharing your thoughts and concerns with the National MS Society regarding CCSVI research and treatment. We applaud the work of MS activists like you in the U.S., Canada, and around the world who seek to bring greater visibility, focus and funding for MS research and in particular, CCSVI. The National MS Society supports all actions that will lead to new and better treatments for MS and ultimately, a cure for the disease.

We understand your interest in seeing CCSVI treatment implemented. In our role of MS activists and in order to pursue unanticipated leads in MS, the National MS Society recently established the Rapid Response Fund. The global outreach, expedited review process and the $2.4 million in funding for our initial CCSVI grants, in collaboration with the Canadian MS Society, is an example of this fund in action. These grants will allow us to gain the answers needed to determine what the relationship is between CCSVI and MS so that the appropriate next steps can be taken as quickly as possible. Confirming the findings of earlier researchers, such as Dr. Zamboni and Dr. Zivadinov, is important, since as they themselves have stated, the relationship between CCSVI and MS is unclear.

Work on these new studies has already begun. These studies will achieve several critical goals. First, they will carry out significant steps needed to confirm the phenomenon originally described by Dr. Paolo Zamboni. Second, they will resolve conflicting data from previous research such as how frequently CCSVI occurs in MS, and how often it occurs in people who do not have MS. Third, if blockages are found, the findings will speed the way to determining whether therapeutic trials to correct them will be helpful in improving or altering MS disease process.

Adding clarity to the relationship between CCSVI and MS is essential in assisting people with MS secure any treatment they may want to consider. Medical institutions and health care providers require research data confirming the validity, necessity, and safety of any procedure they provide and in their view that data is not yet available as it relates to the relationship between CCSVI and MS.

Both the international review panel and the grantees they recommended for funding include an integration of a team of experts drawn from all key relevant disciplines including neuroradiology, neurovascular imaging, MS imaging, vascular surgery, biostatistics, interventional radiology, interventional neuroradiology and MS clinical neurology. Bringing together experts across these areas will help to facilitate understanding of CCSVI in MS as quickly as possible.

The MS Societies are only a part of the global effort underway to pursue the CCSVI lead. It has been reported to us that Dr. Zamboni is in the process of developing a randomized clinical trial comparing disease modifying therapy with and without balloon venoplasty with sponsorship from the Italian Government. Also researchers from the University at Buffalo are undertaking a placebo-controlled trial involving 30 people with relapsing remitting MS.
The U.S. and Canadian MS Societies are now in discussion with the Multiple Sclerosis International Federation to establish an international CCSVI Research Coordinating Committee to consider and share research data and information from ongoing work that is underway around the world – further speeding progress.

I know that the Society can sometimes be perceived as some sort of faceless monolith, but this is not the case. The majority of us at the Society have direct personal ties to the disease. For me, it’s my best friend and my beautiful daughter-in-law. It’s one of the reasons we’re here, in order to end MS.

We want to thank-you again for taking the time to share your thoughts. Your opinions matter to us. We realize MS stops people from moving and we are right there beside you working to create a world free of multiple sclerosis. Below are some links to information from the Society’s Web site: www.nationalMSsociety.org that offer more details on the concerns expressed in your letter to the Society.
• Over $2.4 Million Committed to Support 7 Initial CCSVI Grants to Determine the Role of CCSVI in MS Disease Process
FAQs About Newly Funded CCSVI Grants
• FAQs About CCSVI
• Published Studies To Date
• Summary of the April 14 Web forum "CCSVI and what it could mean to people living with MS," hosted by the National MS Society and the American Academy of Neurology with Dr. Paolo Zamboni, Dr. Robert Zivadinov, Dr. Andrew Common and Dr. Aaron Miller. View the recording, read the transcript (pdf) or watch on YouTube
http://www.nationalmssociety.org/news/n ... x?nid=3414

Best regards,

Arney Rosenblat
Associate vp, public affairs


Subject: Thousands of individuals nationwide are joining a grassroots movement of MS activism

To Whom It May Concern,

I feel that I am a pretty lucky guy – I have a beautiful wife, healthy newborn daughter, a great career, and I have MS. Why am I lucky to have MS you might ask? The reason is that there is now treatment – a treatment that does not involve drugs and has a higher percentage rate of actually treating the disease. Fortunately, the NMSS and its local chapters encourage folks, with and without MS, to become involved by stating “Thousands of individuals nationwide are joining a grassroots movement of MS activism”. I cannot agree more – so I am writing to let you know I am taking up the call and joining the TENS of THOUSANDS of folks that are becoming activists for MS treatment through the liberation procedure.

I encourage you to take some time to reflect on the research and make your own connections. I am not going to speak out against drug companies, profits, or conspiracy theories in this letter. I will point out that venous abnormalities have been studied thoroughly in MS for decades and the research papers are easy to obtain and the technology now exists to identify and correct the venous cause of MS.

Last week I called your office to request a referral to doctors that might be performing the liberation treatment in NC, but I was immediately transferred to the NMSS national hotline. I was a little hot at first, but the lady on the line assured me that my neurologist should be able to assist with this information. I must say, it was good that the NMSS is trying to work to assist folks in obtaining this procedure although they don’t support the facts already associated with this treatment.

Unfortunately, we need to shift our paradigm toward researching and treating this issue. We also need to shift our paradigm away from the f the neurology community, and focus on the interventional radiologist and other practitioners who can assist in identifying the measures that need to be taken to alleviate the burden of MS. The great news is that the instruments, protocols, and methods have already been developed to perform a liberation procedure and they are being used every day for other, similar venous issues.

The North Carolina MS community needs your support to begin contacting professionals across our great state to encourage them to take up the liberation procedure and begin healing our sick. We have the greatest teaching hospitals in the world located right here in NC, and they should know that you support them and that organizations such as yours should provide them with the encouragement and tools they need. In addition, the NMSS local chapters should be advocating this research with press releases to local newspapers throughout the state.

I have to say that I have a hard time supporting NMSS until CCSVI is brought to the forefront. The treatment has been proven by researchers and doctors and has been brought to the light of day by activists and people with MS. I will continue to bring CCSVI to the afflicted, to the caregivers, and to the doctors until this simple, safe, and affordable procedure is brought to the people who need it most. As you know, some folks cannot wait for trails to prove that an already accepted procedure is safe and effective.

MS stops people from moving, but it appears the only people not moving are the NMSS. Will you be willing to move with us?
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