In August, the Canadian Institutes of Health Research, in collaboration with the Multiple Sclerosis Society of Canada (MSSC),
convened a “meeting of top researchers … with a special emphasis on

neurovascular issues including the recently proposed condition called

CCSVI.”

Sadly, it was an expert group with no experts in the imaging/treatment of chronic, cerebrospinal venous insufficiency (CCSVI).

Leaders, such as Dr. Sandy McDonald — the only Canadian to be trained by liberation treatment pioneer Dr. Paolo Zamboni, and to have
performed the procedure here in Canada — were not consulted.

Moreover, there was no inclusion of international experts in CCSVI/liberation treatment, no data presented at international
scientific conferences, and no site visits to labs and operating

theatres, but rather just blind acceptance of a handful of studies,

including two which had been accepted in an astounding six weeks.

After the secret meeting, we were told, incredibly, that
CCSVI/liberation experts were not included for fear of biasing the

discussion; surely, disregarding experts is a dangerous precedent. Yet

researchers, who had vehemently spoken out against the liberation

procedure, were included in the group.

A new “scientific expert working group” has been appointed, but sadly suffers the same flaws as the initial group — namely, no experts, no
experience, and many undeclared conflicts of interests. The new group is

to ana-lyse interim and final results from seven Canadian and U.S. MS

Societies — funded studies, for which we already have answers.

Why is the government waiting for results when more than 3,500 procedures have been performed in more than 50 countries; when Bulgaria,
Canada, Italy, Kuwait, Poland, and the United States report that 87 to

90 per cent of MS patients show one or more venous abnormalities in MRIs

and ultrasounds, and 97 per cent when angiography is done?

Canadian MS patients deserve evidence-based medical practices. But how can this right be realized when their government refuses to collect
any evidence? We have been calling for the collection of evidence since

the spring, through clinical trials, and a registry.

It is more than unfortunate that Canadian patients, who have been travelling overseas since January 2010, have not had their results
tracked, for example, at one month, three months, and six months after

treatment. One Canadian neurologist, who had the liberation procedure,

said to me, “if we had collected the evidence in a registry for the last

many months, would we still be calling these anecdotal stories?”

Finally, like many MS patients, we are frustrated with the government, and want an investigation into how this file was handled so
badly: how special interests co-opted science; how an organization that

was supposed to steadfastly advocate for MS patients flip-flopped on its

position; how process was used not to do science; how conflicts of

interests went undeclared; how a pioneering surgeon had to risk his

reputation; how MS patients were forced to fight the system; and how the

minister repeatedly failed to advocate on behalf of suffering

Canadians, particularly with regard to followup care — especially when

we began raising the issue in July with officials?

And ultimately, who was responsible for repeatedly failing to take leadership, and who must be held accountable for the abject abdication
of responsibility?

http://liberationtreatmentccsvi.com/2011/01/canadas-ms-patients-are-owed-an-explanation/