Cat-calling, taunting, chastising, and even mocking people living with multiple sclerosis is not going to get you in my good graces.

Dr. Palo Zamboni’s theory that MS is caused by narrowing of veins draining blood from the brain (CCSVI) is not a particularly new idea: the so-called Father of Neurology, Dr. Jean-Martin Charcot, also thought MS may be vascular in nature. This theory has been questioned by medical science (and since discarded as unlikely) for generations.

Media coverage of Zamboni’s Liberation Treatment for MS using venoplasty sparked an online storm that has all but neutered the Canadian MS Society — which sought to debunk the theory straight-off — and led to the creation of the Reformed MS Society, whose aim is to make the treatment available in Canada in tandem with clinical trials.

Thousands of well-meaning donors and fundraising participants set out on a celebratory lap of four-odd miles in support of the MS cause in Seattle this past weekend. As they made their way out of the opening rally, they were greeted by members of the CCSVI movement, who were out in force to mock the National MS Society and its efforts to help people living with multiple sclerosis.

Later Sunday night, news reports stating half-truths and outright lies coming from the protesters greeted walkers flipping on the evening news to hear of the walk event’s success. Falsehoods like, “The National MS Society won’t fund CCSVI research” and “The MS Society and your doctors are trying to keep you sick” were coupled with video taunts like, “I used to have MS too” by a person running around, pushing an empty wheelchair.

One man came by our team’s headquarters to pass out a full-color flyer about the treatment his wife had received in Albany, NY. “We didn’t tell the doctors she had MS,” said the man. “Otherwise our insurance wouldn’t have paid for the procedure.” He was happy to report (as I was happy to hear!) that his wife’s MS symptoms “have totally gone away.”

This part is important: I am very happy for the people for whom CCSVI has led to the return of functions!

My point is simply this…until there is a convincing body of research, Get Out Of My Face!

I found it particularly odd that this group was pushing the “conspiracy theory” just days after Dr Zamboni’s ethics were called into question for failure to disclose his patent application for the device that is used to detect CCSVI. (Note: This blogger has no issue with the process here. It is the lack of disclosure that taints the argument that All Other doctors are out to make money from MS patients and Dr. Zamboni is a warrior against the establishment and Big Pharma’s money interests.)

The National MS Society is far from perfect but they strive to improve themselves and to deliver on their promises to our community, and I will not ask much more from an organization than to improve and deliver.

To clear a few things up:

• The National MS Society (along with the Canadian MS Society) has ponied up nearly $2.5 million and fast-tracked CCSVI research at an unprecedented rate.


• Neurologists are the second-lowest compensated doctors (next to family practice docs, formerly called general practitioners), because they have few “procedures” for which they can bill. Quite the converse can be said of interventional radiologists, who charge $7,000-$10,000 (often out-of-pocket for patients) for the Liberation Treatment.


• The NMSS provides support and services to people living with MS. These MS services include, but go far beyond, searching for better treatments and an eventual cure for MS.


• The NMSS offers hundreds of links to information on CCSVI when you simply search “CCSVI” on their web site.

My words here are sure to rally voices in support of CCSVI treatment. To you, I will state again that I support research into this idea. I have raised funds and donated my own money to this research and look forward to its results.

The intimidating and disrespectful tactics of supporters who want to belittle the rest of us for wanting to know more about this CCSVI’s validity are what I take issue with. No one has the answers yet, so why would you stand and belittle people for trying to make a difference in the lives of those of us with MS? Why would you scoff at the very people who have put out money to help prove or disprove the theory of CCSVI?

Why do you have to “hate on” us for wanting to know the whole story?

I will not be responding to anonymous comments on this subject.

Wishing you and your family the best of health.

Cheers
Trevis

Don’t forget that you can also follow me via my Life With MS Facebook page and on Twitter.

http://www.everydayhealth.com/blog/trevis-life-with-multiple-sclerosis-ms/ccsvi-activists-or-cult/