Thursday, 30 June 2011

CCSVI Trial

Canadian Health Minister Leona Aglukkaq announced on Wednesday that federal funding will be made available for clinical trials of the so-called liberation therapy for MS'ers.

Read more in the Calgary Herald

"What will convince you that the treatment for CCSVI works or doesn't work?"

9 comments:

  1. This is such hogwash. CCSVI is simply a placebo effect. MS'ers are so desperate they're willing to try anything resembling effective treatment. I sometimes think that MS'ers are holding back progress by jumping on unproven bandwagons. It's derailing efforts.

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  2. It may be hogwash, but a lot of us are hoping the treatment works. I want to see wheelchair users walking again. The Canadians must make sure we get the right answer.

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  3. Re "I want to see wheelchair users walking again." Aren't you being unrealistic?

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  4. Re: "The Canadians must make sure we get the right answer." We should not do trials with the assumption to get the answer we want. This is what I was referring to when I did the previous posting on biased Pharma-sponsored trials.

    I am assuming you all know about randomised controlled trials? If not, I will to a posting on this!

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  5. Venoplasty for CCSVI is an excellent treatment for CCSVI. This treatment has also improved many of my daily symptoms. The last 10 weeks have been the healthiest I have had for over two years.

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  6. John, How do you know that you have not responded because of the placebo effect?

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  7. re "'I want to see wheelchair users walking again.' Aren't you being unrealistic?"

    That's a bit harsh Prof G. Whoever left that comment is probably someone living in hope and you just dashed that hope with one clean swipe.

    I was in a wheelchair for 7 months and then I could walk again. After another relapse I was back in a wheelchair for 3 months now I am walking again. If Prof Franklin comes through with his Axin2 drug then why can't people with progressive MS walk again?

    I suggest you need to have faith Prof G. You cannot possibly know every treatment that's being developed for MS.

    Sorry if my tone comes across as blunt but your comment did upset me.

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  8. Sincere apologies, I was referring specifically to Liberation therapy, not to the other potential treatments. With other therapies it is a possibility.

    None of the people with MS, who I look after that have had Liberation therapy (against my advice) and have been using a wheelchair continuously, have recovered to a point that they can dispense of their wheelchair. This and other factors make me very concerned about the level of expectation in relation to treating CCSVI!

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  9. RE ‘Placebo’
    Obviously I can’t categorically say if it is, or isn’t, a placebo effect - this is why the trial news is very welcome. I can say that I have no regrets about having treatment and that I did have CCSVI as well as RRMS.

    I do know that the catheter venogram of my jugular and azygos veins showed the issues identified by Zamboni. I know venoplasty vastly improved blood flow in these veins.

    I know what my own body feels like and what my daily symptoms were like. I know what the previous 3 years has been like. I know the difference in the last two months. I know that I was very hopeful that Rebif would improve my daily life. I know that it didn’t.

    Besides which I went for CCSVI treatment with fairly low expectations, really just hoping it would help with fatigue, (which it did), as this seemed to me to be a plausible consequence of a circulatory problem. The improvements to my mobility were truly unexpected and very rapid. I could walk in a hobbly, limpy way before, and now my gait is near normal. Since then each week has been a bit better than the week before. How long does a placebo effect last out of interest, I figure it’s more than two months but I’m curious to know.

    I have nothing to gain by advocating this treatment by the way and I am aware that not everyone has benefited from having the treatment…

    Anon, do you have MS?
    Prof G, did you get my email, and also have any other people got in touch after treatment?

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