This Is MS Multiple Sclerosis Community: Knowledge & Support

Read all about it: http://www.cbc.ca/news/canada/story/2012/09/28/ms-ccsvi-clinical-trial-bc-que.html

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Carpe Diem

Great. A Neuro/MSSociety collaboration. Surely they will find exactly what they are looking for?!

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Albany 2010. Brooklyn 2011
Hurry up and wait.

Surely this is where the rubber hits the road. These are the national trials we've been waiting for. I know he's supposed to be a "nay-sayer" but I guess if anyone wants observer status they'd better speak up now or forever hold their peace. We can't just wait for operational mistakes and blame it on the MSS. These trials are taking place in Vancouver and Quebec so far. Will someone who is someone ask to liaison between the trial researchers and the stakeholders in Canada, examine blinding, read protocols in advance, request use of IVUS, monitor anti-clotting regime, follow-up plans, etc.? Or are we content to wait for publication? These trials don't start until September.

How is the Ministry of Health involved? Kirsty Duncan or other MPS?

Do they intend to consult with acknowledged experts in this field? Or do they have to wait for the experts to publish? Is anyone from Italy involved?

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

If the trial has been approved, I would guess the protocol has been defined and approved.

It don't start until November. I don't think things like that affect whether it will retain it's approval. Use of IVUS might affect its funding, but not, I would imagine, in a major way. I think anything the good Doctor asks for will be duly considered until well after mid-October.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

a Macleans article
http://www2.macleans.ca/2012/09/30/fina ... issed-off/

Hopefully the CCSVI Coalition Scientific Advisory Board had effective input ( http://ccsvicoalition.org/board-of-experts ).
I wouldn't want the trials to be derailed at this point but I hope they chose wisely in all the things you listed, 1eye.

http://www2.macleans.ca/2012/09/30/fina ... issed-off/

I don't consider conversations about a procedure to be a substitute for experience performing the procedure.
With the stakes as high as they are, I would want this to be research done by experienced providers.

And here's the bit about Anthony Trabbolouse:

Conflict of interest.

Hey if he had accepted tons of moolah from drug companies recently I might be worried. But aren't we in another thread looking right at stem cells combined with the CCSVI treatment? Wouldn't it be cool if he were able to crank up a comparison group that included autologous stem cells? If he were talking to the experts in that area about it, as well as the angioplasty experts?

OK, so he was disappointed. Maybe he got over it.

He might even want to invite Dr. Sclafani to assist. But not if anyone holds a gun to his head, including this forum.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

BC Trial, Vancouver Sun

http://www.canada.com/vancouversun/news ... ba48ada9d1

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Albany 2010. Brooklyn 2011
Hurry up and wait.

He got that right.

They have to bring up the latest death, just to be thorough. It wouldn't be worth its journalistic salt if they left that out. They forgot to mention that about 500 Canadians or so have died from "MS" since then.

Other than that, it's an OK article.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

It's great news.

What I (still) don't understand: Why isn't a kind of 'supervisor' used in these trials...i mean a very experienced ccsvi doctor.
We all know results are very much influenced by the way the trials are performed...

I spent a week with Dr Zamboni too. I asked dr Galleati how many cases it took for him to be comfortable and he said fifty.

I then showd galleoti and Zamboni a case study and they both got it wrong and missed the stenosis.

I can tell you that a trial done by inexperienced physicians will lead to the following results:

1.It is dangerous. many patients thrombose their jugular veins
2. many patients will have benefits that last a couple of weeks to a couple of months

A group of us offered our help and advice. No one ever contacted me.

it is a situation that makes me angry

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

That's what i mean; with all the 'confusion' the last few years you would expect some structural approach and 'requirements'....but no....just the same old story....it's frustrating

Any chance you could let us know what their thoughts on IVUS are? I can not remember seeing them comment on this topic either way.

"Fantastic"

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com