UBC STUDY

[thornyrose76]

Any one heard of when the UBC study is to begin or when one can apply?[/b]

[beerduff]

Any one heard of when the UBC study is to begin or when one can apply?[/b]

looks like there might be a hold up.
So disappointing if this info is correct.
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[prof8]

Jeez....that's really unbelievable.

[jimmylegs]

i totally get it, however.

[Billmeik]

does anyone know if that study is full?

[Greenfields]

Thats a kick in the junk. It is put on hold for a sporting event. Daft.

[happy_canuck]

I spoke with UBC yesterday and they told me they had not yet released a call for participants, so the study is not underway yet. They are hosting Dr. Zamboni and colleagues in February to learn everything about his theories first hand.

Yes, traffic in Vancouver will be a mess and most campuses are closing for a couple weeks. But I am sure the researchers will still be doing their thing behind the scenes to get this thing rolling. It's just technicians and participants (if there were any by Feb 12) that won't be active through the Olympics, in my opinion.

OT: I have speed skating and curling tickets, so I will be in the middle of those crowds. Go Canada!

[Johnson]

I just had an appointment today at the UBC MS clinic. I asked the neuro if he wanted to talk about the 800 pound gorilla - firstly, can I be in the study, and secondly, his own views on CCSVI.

The study is not a go yet. They have applied for a grant, and are trying to collect donations, and such. No names are being taken yet, according to him. He is a neuro, and is involved, but it's still up in the air.

As for his own views, he is very interested (and I sensed, moderately excited), but the old "it needs to be studied, Zamboni's study not controlled, Stanford and Boston shut down for studies, there has been one death..." He went on to tell me about a therapy from Edmonton that he had been urged to back, and did, but it fell apart in the study - 0% efficacy. Once burned, twice shy, and all that, I guess.

I was thinking of telling him that I was going to Poland in May, until he started telling me about one of his patients who had the procedure in Poland who was calling him up to complain about pain from the stent. He seemed bemused that someone would go to Poland for liberation, and turn to him to deal with the effects. It was a woman from Edmonton - perhaps reading on this forum? If so, there is a lot of info. on the pain from Rose, cureIous, and others. It seems that the pain subsides over time. Makes sense, I had a dental on-lay, and it was sensitive (minor pain) for about 3 months after. I can still feel it. I ended up talking with him about the Prineas study, he prescribed me valium for the dizziness (!), and I decided not to bother telling him about going to Poland. He'll find out when I go for my follow-up with him next January. Grin.

I'm drifting OT, but the UBC study is not starting this month or next, and there is not yet a list of participants.

[esta]

hi johmson
thanks so much for your input in regards to UBC where I thought I'd also go after my Poland trip in June. In fact I thought they'd be excited about having a pre-and post patient to study.
By the time they get up and running Buffalo will be finished, which is maybe why they haven't started?????
If I get stents, by then hopefully. someone will find a kind doctor in Canada.. Surely they realise how important it is is to us and our future and that any lapsed time is too long.
esta

[lilsis]

johnson, are you able to explain what you meant by "Stanford and Boston shut down for studies," ?

do you mean their studies have closed and are now reviewing their data, or their studies have been prematurely ended?

[facetspera]

I saw my neurologist at UBC and asked to be on thelist for the research. I was told the research would be on twins. Apparently that is the proposal that was sent in. Astonishing since it has not been mentioned in any of the published material from UBC.

[Johnson]

johnson, are you able to explain what you meant by "Stanford and Boston shut down for studies," ?

do you mean their studies have closed and are now reviewing their data, or their studies have been prematurely ended?

lilsis,

I inferred that they stopped doing the procedures in order to pursue full studies into CCSVI and treatment. I'm very foggy, but I had not known of any procedures done in Boston.

I'm starting to get the feeling that we are being "used" to drum up money for equipment for studying not just CCSVI/MS, but other neurological disorders such as Parkinson's, Alzheimer, etc. Something that I wonder at is that $63 million goes to MS research in Canada every year, and the MS society is only offering $100,000 for each of two years. I don't get the impression that they are really interested in actually relieving any of us any time soon.

That $ billion for Olympics security would do a lot of research.

[dunkempt]

That $ billion for Olympics security would do a lot of research.

Yeah - and look, I have MS, my brother has MS, and I want everything done, and I donate to the research and I advocate for more people to do the same. But really EVERYTHING is more important than the Olympics:

Haiti, clean water for everyone, cancer research, education, heart and stroke research, urban poverty, pollution, global warming, loss of topsoil, better monitoring of asteroids that might wipe out the whole planet ...

So should we never have the Olympics again? "Shall there be no more cakes and ale because thou are virtuous?" (I think that's what Falstaff said.)

The reason there isn't the money we want being spent on MS research (in the way we want) has nothing to do with the Olympics, or even tax cuts, or anything else. It's because we (or our representatives) don't think those specific things are important enough. Recession or not, in the Western world we live in very rich societies. There would be money for the Olympics AND more MS research or any other good cause you can think of if more people wanted it.

Without that political will or understanding, the money still wouldn't be there even if nothing was spent on the Olympics, or on cleaning the streets, or any other budget line.

-d

[Johnson]

I get you, dunkempt, and I agree with all that you wrote (well, other than the asteroids - another topic). My comment about the Olympics security was admittedly fatuous, but there you have it. And really, Haiti needs relief more than I do, right now. It doesn't detract from the wasted money though, and if we could donate the money, that we will otherwise spend on testing and procedure in a foreign land, to Haiti relief...

We are indeed incredibly lucky to live where we live, and to have what social infrastructure we have (universal health care, etc.), but I will not lower my reasonable expectations of the government, medical system, etc., because someone else is suffering "more" than I am. That is where your mention of money for all these things - if people demanded it - comes in.

[dunkempt]

I will not lower my reasonable expectations of the government, medical system, etc., because someone else is suffering "more" than I am

You're right about that. For about 20 years I was thought to have Chronic Fatigue Syndrome, not MS.

Try to get people interested in that: "You're tired all the time; me too - get in line." I had to go to court just to get social assistance by reason of disability.

Lots of people "suffered" more than I did. But that didn't change the kind of help I needed - or make my expectations unreasonable. And when my monthly cheques - which mostly went to groceries - were cut so people who were already comfortable (as I am lucky enough to be now) could have even more... Well, I might have caused some real trouble (if I hadn't been so tired).

-d