POV - "Chronic cerebrospinal venous insufficiency and M

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

POV - "Chronic cerebrospinal venous insufficiency and M

Postby LadyDoe » Tue Jul 27, 2010 7:43 am

Has anybody read this article?! by the way, it's a "point of view", so i dont even know how the BLEEP it got published in the Annals of Neurology - oh, wait, Annals of Neurology?! oh, THAT's how this rubbish managed to get published! Man, I should REALLY use my brain a little bit more hey?! oh, but..wait.. I have MS! and i suffer from brain fog/lack of mental clarity ALL DAY LONG.. cause no-one will help.. I guess i can be excused then!

Anyway, bored as I am at 12:30am, I decided to google each of the author doctors of this article. Turns out the majority are neurologists, a handful are their sidekicks (neuroradiologists) and one DEVELOPS DRUGS AND IS GIVEN HUGE incentives from Teva (team copaxone) and Biogen (team Avonex). Interesting to see team serono (rebif) hasn't been included - however this article

http://www.nature.com/nbt/journal/v19/n ... 1_696.html

highlights how PETTY drug companies are against one another - and i guess the attitude is adopted by its prescribers too.

oh and the cherry topping everything else I've ever read was brought to the table by none other, than *drum roll* the MSRA themselves (yes, they did this one all on their own!). They published the following statement on their website about CCSVI LIBERATION - "all patients remained on disease modifying therapies makng any interpretation of efficacy questionable". Ok, (now i am being real generous) IF the CRABs generally worked, that argument would be viable and rational - however, they really need to stop before they continue to become the laughing stock and last resort support for PwMS..

We should really start out own support groups with REAL ppl behind it!
... if it's going to be, it's up to me ... :)
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Postby concerned » Tue Jul 27, 2010 10:00 am

Don't the drugs work as far as reducing relapses go? Are there studies that say that liberation halts progression?

Once again, i'm not pro-CRAB and my mother has never taken a DMD. Just wondering is all.
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Postby BooBear » Tue Jul 27, 2010 10:37 am

Actually, there have been three independent studies that show that CRABS may not be as effective as originally claimed- and may even worsen progression versus taking nothing.

The appalling piece of this statement is that the efficacy of the Liberation treatment is called into question when CRABS are also taken in conjunction with the treatment. Am I to infer that CRABS made people walk again? Restored their balance? Provided near-immediate improvement?

If so, then why did those things not occur while on the CRABS?

(By the way- I was on Avonex for years and continued to progress. Still had relapses.)
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Postby concerned » Wed Jul 28, 2010 9:01 am

yeah, I know they haven't been proven to slow progression but that's not what they've been designed for. Don't they reduce relapses, at least for some? Did the people who have been able to walk again after Liberation have RRMS? did they have periods of mobility and immobility before the procedure?
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Postby BooBear » Wed Jul 28, 2010 9:07 am

The quandary there, concerned, is that we are looking at a hypothetical reduction of relapses.

Let's use my situation as an example. I have never gone more than a year without a relapse since my dx in 2004 (coincidentally, the year I was on the Swank Diet), with an average of six months between relapses.

I was on Avonex the entire time.

So should I infer that without Avonex I would relapse every three months instead of every six? That is the issue with the reduction- all we know is when a relapse happens; we can't assume that we would have more relapses without the medication.

The individual variability of this disease makes it very hard to substantiate the "what would have happened without the drugs" argument. Even those that appear to be responding well to the CRABS have no real idea if they are experiencing fewer relapses.

I believe the progression is the real milestone to watch. If the disease progresses, then it is only a matter of time before you have a relapse. If we know the drugs do not slow progression, then you have to wonder what the point is of taking them at all.
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Postby concerned » Wed Jul 28, 2010 2:55 pm

Some people say they help them anyway. I remember reading in the paper about a member of that band Billy Talent :roll: talking about how taking whatever drug or drugs he takes allows him to continue playing in the band or something. I think the point of taking them is that they might help some people a little, and with no other options until really less than a year ago (if it is an option, let's see!) maybe that's reason enough for some to take them.
I guess what I was getting at was that it isn't useful to compare the two because they are designed for different things. (reducing relapse vs. "stopping progression")
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Postby Cece » Wed Jul 28, 2010 3:57 pm

Tysabri and maybe the new oral drugs have higher efficacies. I could see those interfering with study results. The efficacy of the CRABs is laughably low. CCSVI treatment just needs to beat placebo effect to beat what can be attributed to CRABs.
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