A blow to revolutionary MS therapy

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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mangio
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Post by mangio »

another
youtube-mcbpj's channel
http://www.youtube.com/user/mcbpj
the pre and post seem to have some strong differences, again could
be just placebo
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ikulo
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Post by ikulo »

mangio wrote:another
youtube-mcbpj's channel
http://www.youtube.com/user/mcbpj
the pre and post seem to have some strong differences, again could
be just placebo
It could be placebo, it could be real, it could be aliens zapping the guy with ray guns, either way it's incredible to see him feeling better and my heart goes out to him and his family. woohoo!
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mangio
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Post by mangio »

Amen. God bless him.
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MrSuccess
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Post by MrSuccess »

PX - the one that has some foaming at the mouth. :wink:

I'm refering to the German Study-Paper - pick a description that satisfies you :wink: -

I see the hair-spliting expert couldn't resist ........ :roll:


One thing is very apparent .... NONE .... of the CCSVI - Zamboni critics have ACTUALLY done more than read and doubt .

I hope my spelling is satisfactory . I'm certain it's beeing lookd at real carefuwl like . :wink:

Seriously ..... don't bother with the opinions of those that cannot perform the Liberation procedure .....

How in hell could they possibly know it benefit's WITHOUT actually treating CCSVI in pwMS ?

Got an answer for that PX ?





Mr. Success
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patientx
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Post by patientx »

Huh? I ask a question, and I get this archaic answer in reply.

There seems to be some confusion about the German studies:
drsclafani wrote:the IRB brought up two publications that concerned them. One was the german article stating that there is no good correlation between ccsvi and ms. i have to be able to rebut this paper so i looked for it. but it is in a german journal. I went to the journal webpage and bought the article.

Mind you, i have only two years of high school german, and i only got a B. But the article seems less than convincing. Does everyone know that the authors imaged only 10 patients with MS and 7 patients with no evieence of ms.

they did not find a correlation but it was not statistically significant in proving their point. it was offensive to paolo Z and robert Z.

the other paper was pure opinion. not fact.


drsclafani wrote:
[...]and how did she get the paper in english?

[...]
There are two different papers from different German authors that somehow dispute CCSVI theory. The one mentioned by Cheerleader is titled "No cerebro-cervical venous congestion in patients with multiple sclerosis", where they have tested 56 pwMS and 20 HC. They found only one person with CCSVI.
The other one is titled "Chronic cerebrospinal venous insufficiency" and multiple sclerosis: critical analysis and first observation in an unselected cohort of MS patients, where they have tested only 10 pwMS. They found 2 persons with CCSVI.
The paper which I read looked at 56 people with MS, and 20 controls. And the authors found that 0 of the people examined met 2 out of the 5 ultrasound criteria for CCSVI. I was trying to figure out if there were more studies/papers coming out of Germany. Hence my question.
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MrSuccess
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Post by MrSuccess »

PX - I always look forward to your posts. No offense intended. :wink:


The CCSVI connection to MS is gaining support by the day.

Until I read any study / report .... whatever .... that ''X'' performed the LIBERATION procedure on '' Y '' number of pwMS and found the Liberation procedure without beneficial results ..... I am supporting Dr. Zamboni .

And '' X '' had better be a significant and respected investigator. :idea:

Right now .... the Zamboni critics are crawling out from everywhere ... like bugs . They are offering negative opinions based on what ? What they read in Med school ? How difficult is that to do ?

As we are seeing .... there is no shortage of so called experts ... looking for their 15 minutes of Fame. It is the easiest thing in the world to say ...this won't work .....

I say ..... Show me .... don't tell me

PX ... check out those 7 studies now funded by the MS Society ... of interest is the only one that plans on going into the veins to see for themselves. [ If I read the protocol correctly ] It is the UBC study .

That is the one to watch . :idea:



Your research abilities far exceed mine. And I know you understand the issue better than most of us here at TIMS . You must be pleased with the work and research being done on CCSVI . I know I am.




Mr. Success
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Sotiris
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Post by Sotiris »

patientx wrote:[...]The paper which I read looked at 56 people with MS, and 20 controls. And the authors found that 0 of the people examined met 2 out of the 5 ultrasound criteria for CCSVI. I was trying to figure out if there were more studies/papers coming out of Germany. Hence my question.
Sorry, my mistake. I wanted to write that a bi-directional flow in an IJV was detected in only 1 pwMS. But they found noone with CCSVI. Sorry again for the confusion I have caused, I 'm going to correct my post.
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patientx
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Post by patientx »

Sotiris wrote:
patientx wrote:[...]The paper which I read looked at 56 people with MS, and 20 controls. And the authors found that 0 of the people examined met 2 out of the 5 ultrasound criteria for CCSVI. I was trying to figure out if there were more studies/papers coming out of Germany. Hence my question.
Sorry, my mistake. I wanted to write that a bi-directional flow in an IJV was detected in only 1 pwMS. But they found noone with CCSVI. Sorry again for the confusion I have caused, I 'm going to correct my post.
No apology necessary. You're right - they did find one patient who showed reflux, so it's a small point to say they didn't find any with CCSVI.

I got confused by the mention of the other German studies.
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1eye
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Post by 1eye »

Experts in the diagnosis and treatment of CCSVI exist all over the world. Of course they are *all* snake oil salesmen, and their patients are *all* suffering from the dreaded PLACEBO effect. I bet I could get a lot of donations if I started a new club called the "Placebo Society".

Listen: If even 10% of these treated people are getting the benefit they appear to, something, other than PLACEBO, is going on. If it is PLACEBO, it will be the first treatment that has ever had any efficacy, by PLACEBO alone. But science is full of firsts. Why should this be any different? If barking at the moon worked better than Avonex, I would be all for it. They should give Paulo Zamboni a Nobel just for his pioneering work on the extroardinary efficacy of PLACEBO, and discovering that such a terrible disease can be beaten, with PLACEBO alone.
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concerned

Post by concerned »

Experts in the diagnosis and treatment of MS exist all around the world, but THEY are all snake oil salespeople?
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Post by Lyon »

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Last edited by Lyon on Sun Nov 20, 2011 7:22 pm, edited 1 time in total.
concerned

Post by concerned »

Furthermore, the placebo effect probably factors into positive feelings felt by all treatments, not just sham ones. The placebo effect isn't an insult, it's a reality.
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1eye
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sugar pills

Post by 1eye »

Aside from the obvious ad hominem argument, I have never seen an adequate response to the following conclusion, reached in the New Englannd Journal of Medicine in 2001 (and later), in a meta-study by the Cochrane group:

"Conclusions We found little evidence in general that placebos had powerful clinical effects. Although placebos had no significant effects on objective or binary outcomes, they had possible small benefits in studies with continuous subjective outcomes and for the treatment of pain. Outside the setting of clinical trials, there is no justification for the use of placebos."

If it can't be used for treatment (and it is *not* ethical to do so), except as an adjunct to real treatment, in the treatment of pain, I say it is just not possible to have a lasting curative effect on historically incurable symptoms. The water at Lourdes does not belong in science.

"The United Kingdom Parliamentary Committee on Science and Technology has stated that: "...prescribing placebos... usually relies on some degree of patient deception" and "prescribing pure placebos is bad medicine. Their effect is unreliable and unpredictable and cannot form the sole basis of any treatment on the NHS.""-- Wikipedia

I know, quoting a quote is hearsay, and placebo shams are specifically allowed in clinical trials, as opposed to practise, but I believe the empirical evidence has now reached significant proportions, far beyond that attributable to placebo effect. And they last for up to 3 years. I'll take it. Ship it. Here's my credit card.

Of course that is only my opinion, but I believe I have some support there. I do not believe this treatment should be used as a study on the efficacy or longevity of the placebo effect. If that kind of effect were available with sugar pills, somebody would have cornered the market by now. It actually takes enough sugar to kill a diabetic. And bury them too.

My apologies if I have offended any real snake oil salespeople.
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Lyon
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Re: sugar pills

Post by Lyon »

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Last edited by Lyon on Sun Nov 20, 2011 7:22 pm, edited 1 time in total.
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Zeureka
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Re: A blow to revolutionary MS therapy

Post by Zeureka »

Cece wrote:
Asher wrote:In the medical literature there are two known cases of serious complications.
Those two known cases are anecdotal, they are not in the medical literature.
Yep, Cece, just read this and wanted to comment sthg similar :)
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