Respecting a Cautious Approach to New Research in Multiple Sclerosis

By Todd

The past two months have been an exciting yet turbulent time for those connected with the Multiple Sclerosis community. With the publication and subsequent media attention to Dr. Zamboni’s research into CCSVI (chronic cerebro-spinal venous insufficiency), a world-wide quest has begun to determine the future impact of his potentially ground-breaking research.

Dr. Zamboni’s research has highlighted a potential disruption in blood drainage from the brain and spinal cord, contributing to nervous system damage typical in MS sufferers. In a study by Dr. Zamboni and colleagues published in June 2009, the investigators assessed blood outflow in major veins draining from the brain and spinal cord to the heart in 65 patients with varying types of MS and compared these findings with people who were either healthy or who had unrelated neurological disorders. The outcome showed evidence of slowed and obstructed drainage in the veins in many of the MS patients. Results of subsequent small studies, again led by Dr. Zamboni, suggest that surgery to rectify the narrowed veins may lead to a decrease in the relapse rate of people with relapsing-remitting MS.

The techniques used to evaluate the proposed narrowing of the blood vessels (CCSVI) include ultrasound and MR imaging designed specifically to study the body’s vasculature in a way never performed before.

The MS communities, world-wide, have taken these findings very seriously and as a result, have launched an accelerated & collaborative effort with radiology and physics experts to determine how common the abnormality is and how easily it may be detected. These efforts will move forward in the form of investigator-initiated research, committed to ensuring that the ethics and protocols and the subsequent clinical trial will be well-established and safe for each and every patient.

In Vancouver, the University of British Columbia is leading the way in this collaborated effort, in conjunction with the MS Society of Canada, and we recognize how fortunate we are to have such leaders in the MS community moving forward on such a large scale.

While Dr. Zamboni’s preliminary results offer a very real glimmer of hope, all MS organizations around the world caution both patients and imaging clinics to be patient. It is imperative that the research moves forward collectively, with investigators who are both trained and invested in establishing the highest standards of research. No clinic or hospital in Canada is currently trained on Dr. Zamboni’s imaging or treatment methods, as both the ethics and protocols behind the pending clinical trial have yet to be established.

CMI feels that the most prudent course of action at this time is to follow what the leading organizations and researchers in MS are advising. The MS Society of Canada has advised that “For safety reasons, the MS Society does not recommend that people with MS be examined or treated for CCSVI outside of an established research protocol”. Until such a time as this changes, CMI will not be offering the imaging techniques used by Dr. Zamboni as we support and respect what leaders in the field are advising.

http://www.mssociety.ca/en/research/medmmo_20091021_faq.htm

CCSVI UBC Letter December 10 2009

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6 comments:

  1. I appreciate your caution. However, those of us who suffer from MS have done the research on Dr. Zamboni and Dr. Haake and others who have ‘proven’ CCSVI. We cannot wait while others want to also ‘prove’ it works. We will be seeking those who will help us now. I realize this can leave us very vulnerable. My/our hope is that we get the surgery required by Vascular surgeons now because our veins are narrowed or blocked, period, regardless if this has been named MS.

  2. Bev,

    Thank you for taking the time to offer your thoughts. We sincerely appreciate your position and offer our support & compassion in your endeavour to seek both answers and treatment.

    At CMI we believe the most prudent way to support those suffering from MS is by continuing to respect what the leading MS societies world-wide suggest. Dr. Zamboni himself is the first to encourage further research into his initial findings, and again, we are completely supportive of this so long as the research is in a trained facility being lead by investigators who have developed a rigorous, ethical and evidence based approach to the testing. We look forward to the day when the MS Society of Canada and UBC encourage facilities to become trained and offer the full CCSVI MRI protocol to patients, but, until such a time as this happens, we will not offer an MRI protocol that is incomplete, not properly tested and where it is impossible to know whether we are providing any value to our patient.

  3. All this talk of controlled studies and proper protocol is great except that a stenosis is a physical thing that can be seen and measured. Maybe taking an ultrasound or MRV before every protocol is pinned down won’t be perfect but they will will be perfectly safe. Further, the risks inherent with angiograms and angioplastys have been known for years. Any vascular surgeon can explain them to a patient who then can decide for themselves.
    The risks of letting MS have it’s way are horrific. This is why rational MS patients are trying to intervene with these well understood procedures.
    Enough with the snow shoveling. Give MS patients a fighting chance.
    Professor Zamboni came forward before the final science was complete for this very reason.

  4. How much did the MS Society pay you to discriminate against MS patients? Anyone with half a brain knows a blockage should be corrected and blood flow restored. Money before people, shame on you!!!!!!

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