Here is the complete CIHR report. link
And to think, after all this time it's still getting back to "we can't do ultrasound therefore...".
At least I found some liner for the bird cage. "There's no studies, therefore we can't study it".
I note they had one MS patient participant, government reps, and the guys we already knew what they would say before they said it. Then as is oft the case in this debate, they overuse the 2009 Zamboni study, highlight it's shortcomings, give absolute weight to the German studies with nary a whimper, and overstate a bunch of obvious stuff about what we don't know. After all, the discussions were "open, animated, and frank". Uh huh. Did that include hundreds of patient testimonies? Don't answer.
Then of course highlight the Cure word right off the bat, wouldn't want to set the bar too low for CCSVI, Mt. Olympus will do.
I think they once again are underestimating the public's resolve here. They obviously have parsed this document very carefully before the meeting ever convened, i.e. dog and pony show. The "consensus" was reached long before seat met table, on how to proceed in dealing with this. The NMSS tried this early on, then of course reversed course with some trinket level studies to quiet the masses. This doesn't appear to be any different, they want one thing right now: time. Space, room to work. They just don't seem to be working towards the same goal as the rest of us, namely to get this thing studied, and studied good, where it can have some teeth.
By playing these delay games, they (the purse string holders, the only ones that matter from a funding perspective) are then able to frame things as they see fit. They couldn't care a whit that the Zamboni's of the world would happily welcome a multi-disciplinary approach, I think we know who "owns" MS right now, and they want the same with CCSVI, perhaps make it a "subtle side effect running concurrent with the disease in some individuals". Which is why they spend so much effort in tying in the term CCSVI with Zamboni. Put a slash in there, call it "Zamboni's CCSVI". That isolates it. Once that's done, just laser focus on Zamboni's 2009 study and call it a day.
I think though that they all severely understimate the will of the people here. I see this as only having a double-down galvanizing effect. MS'ers by nature are fighters, they have spent a goodly portion of their lives as a whole, fighting to just get through the day. Politicians and Dr's do not intimidate the average MS patient, especially the long termers. They've seen a lot come and go after all, what's one more Dr., group of them, or especially spineless finger-in-the-wind politicians?
What they cannot control however, is what is going on right now in the United States, yes, they throw out the IRB spike strips in our hot pursuit of scientific concrete, so we have Hubbard, Stanford, Georgetown, and many many other side roads to go down. Soon, there will be more concrete evidence, in publication, they cannot stop all of them after all. When that happens, that bird cage liner of a report will be a reminder to us all, that movements don't rise and fall on the one ANYTHING, person place or thing. The many parts scattered around right now will build a permanent roadblock to this kind of tripe.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko
, Virtually symptom free since, no relap