Welcome to the new MS Registry. The Health Minister just announced it today. This sounds so wonderful. Finally the government is going to track the people who have had CCSVI treatment. People with MS are going to be listened to. This should have been done a year ago, but better late than never. This is sounding so awesome. Or is it?

Mr. Yves Savoie from the Canadian MS Society said:

“People living with MS will be the ultimate beneficiaries of this monitoring system as it will shed light on important topics like CCSVI, the long-term benefit of current therapies and also serve as an invaluable tool in assisting researchers, health professionals and policy makers in their work,” concludes Savoie.

Have they not already been reporting on the long-term benefits of MS drugs? Did they not already collect endless amounts of data, for many years? If they didn’t, you mean to tell me that no one in Canada was checking to make sure the CRAB drugs work?

So many new and independent long-term studies in 2009/2010 concluded that the CRAB drugs do not work. Also, some studies out of Stanford indicate that over 25% of people taking the beta-drugs become more disabled, than if they took nothing at all.

Shouldn’t this critical drug data be reported? Has all of this new drug data been ignored by the Neurologist network?

Well at least when it comes to CCSVi things will be different. A fresh new start.

Dr. Traboulsee at UBC said:

“Neurologist Dr. Tony Traboulsee, president of the Canadian Network of MS Clinics, called the registry "a milestone in MS treatment and care" that will give doctors "a better picture of disease patterns."

The Canadian Institute for Health Information will receive funding to establish the registry. CIHI will work with the provinces and territories, the Canadian Network of MS Clinics and the MS Society of Canada to gather data on patient symptoms and various treatments, including medications.”

This sounds great. It appears that the Canadian Network of Multiple Sclerosis Clinics will be collecting this important CCSVI data. Canadians will have a fresh, open-minded assessment of this data, to ensure this info gets passed on to the Neurologists and vascular experts from coast to coast. Canadians deserve nothing less. They are receiving millions of dollars, to do set this up.

But wait a minute. Guess who the main contact for the Canadian Network of Multiple Sclerosis Clinics is?

Unbelievably, Dr. Mark Freedman is the point of contact for this organization, who will be collecting this CCSVI treatment data. He’s the very same person who called CCSVI a hoax, and who publicly insulted medical experts who support CCSVI.

So from what I see, the collection of vascular treatment data, will not be looked at by vascular experts. Instead it is going back to the same group, who helped set-up the CIHR Kangaroo Court last August, in which Doctors with CCSVI treatment experience, were not allowed to voice their opinion on CCSVI treatment, and research. A meeting behind closed doors, where no minutes were recorded. So much for open government eh.

Dr. Freedman called this CCSVI movement a cult:

“I'm very disappointed that you would join this mass hysteria movement based on unfounded facts that has led to no less than a cult, stoked by media who are loving the reaction of people feeding them with endless material. What if research shows, as it appears to be doing, that veins of MS patients are no different than anyone else's? Should we all go trying to alter our 'normal' anatomy? Is there no lesson learned from the now famous tragic death of the Costa Rican man who refused the advice of his doctors a) to not have the procedure and b) not to try to unplug it?

But who am I to question the word of the many self-acclaimed experts who feed this frenzy like the rock doctor Embry whose lifelong study of lifeless objects has given him the wisdom to comment on such complex issues?

I'm happy to discuss this with you anytime XXXX, but why you or any other of the cult members believe that I have influence over the government is beyond me. Our system supports evidence-based medicine. To do anything else would destroy it. Thus far the evidence simply does not support the theory of CCSVI regardless of the seemingly countless anecdotal reports.

But then, what do I know about such things?”

So basically at the end of the day, this shiny new MS Registry is simply pre-election window dressing. It’s an attempt to help keep a lid on the growing wave of anti-government / anti-neuro anger being voiced by CCSVI supporters.

Nothing has changed. The vascular experts and IR’s are still blocked. People cannot have this simple angioplasty treatment, and the gatekeepers of the treatment data have already stated their position on CCSVI, loud and clear. 

Sadly this new MS Registry simply directs the critical data back to the old-boys Neuro network. The same group who follow that mid-century autoimmune theory. The same group who claim to own MS.

This Neurologist network continues to control the agenda. The vascular experts are ready to start doing treatments. They are not allowed to have any voice, on this CCSVI issue. The turf war continues. The electricians are controlling the plumbers.

Something is fundamentally wrong here.

The bullshit never ends…

WaYnE

National registry to track health of MS patients:

http://www.ctv.ca/CTVNews/Health/20110323/ms-patient-registry-110323/

Canadian Network of Multiple Sclerosis Clinics: 

http://www.cnmsc.org/ContactUs.aspx

http://www.cnmsc.org/CCSVI-multiple-sclerosis-patient.aspx

Dr. Kirsty Duncan:

http://www.youtube.com/watch?v=GgqmHimQFY0