The need for a double blind clinical trial

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

Postby fernando » Wed Dec 01, 2010 12:28 pm

Sometimes we have a stance about something, we have already made our minds, and we throw 'Science' in the middle just to spin things and confuse everyone.
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Postby concerned » Wed Dec 01, 2010 7:34 pm

The only stance I have is that I don't like telling sick, desperate people that something is a miracle cure without any science to back up the statement.
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Postby CureIous » Wed Dec 01, 2010 8:53 pm

concerned wrote:The only stance I have is that I don't like telling sick, desperate people that something is a miracle cure without any science to back up the statement.


Come come now, who's telling desperate people anything about a "miracle cure"? Setting the bar a bit high dont you think? Sounds a bit straw man-ish to me, but knock him down as you see fit ;)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby rainer » Wed Dec 01, 2010 10:22 pm

A search for the word "miracle" finds 124 threads on the CCSVI forum. Just sayin'.
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Postby CureIous » Wed Dec 01, 2010 10:25 pm

rainer wrote:A search for the word "miracle" finds 124 threads on the CCSVI forum. Just sayin'.


Okay. I was hoping to find these proselytizing pro-ccsvi-the-miracle-cure people that are oft-bandied about, not any particular instance of the word itself. Let me know what ya find...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby concerned » Thu Dec 02, 2010 12:19 am

If you google search those words with CCSVI, you'll find a ton of articles about miracle cures and holy grails, and you'll find a whole bunch of posters here saying the same thing more or less.
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Postby CureIous » Thu Dec 02, 2010 12:46 am

Call me skeptical I guess, anectdotal google studies conjoined with vague inferrences leave me a bit leery....I'd prefer actual quotes from said offenders if you please, google tends to prove just about anything one is looking for..

And we seem to be mixing and matching both "124 hits on TIMS" with the entire internet universe, granted, there's plenty of attention grabbers more concerned with blog hits or obscure headers from obscure internet "news" sites, I mean anyone serious about CCSVI I guess, you know, the one's "pushing" it....
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby frodo » Thu Dec 02, 2010 2:20 am

oreo wrote:Actually I think this is a very poor analogy which only serves to make the CCSVI camp look fooloish.

By the way, have any of you heard of crash test dummies. They are used whenever testing saftey devices whose basic purpose is to save human life & limb. The testers would never put a real human life in that much danger.


Actually is a very good analogy since you know that some patients have a defective vein and you refuse to treat it even if you acknowledge that you don't know which consequences the bad flow will have.

It is like denying a parachute to somebody in free fall saying that you are not sure about the consequences of the impact against the floor, because there are not enough studies.
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Postby Johnson » Thu Dec 02, 2010 4:57 pm

rainer wrote:A search for the word "miracle" finds 124 threads on the CCSVI forum. Just sayin'.


Search results on TiMS for "death", "not a miracle", "paralyzed", "do not resuscitate", "I'm in a wheelchair".

Results 1 - 10 of about 1,420 from thisisms.com for death. (0.18 seconds)

Results 1 - 10 of about 308 from thisisms.com for not a miracle. (0.15 seconds)

Results 1 - 10 of about 113 from thisisms.com for paralyzed

Results 1 - 8 of 8 from thisisms.com for do not resuscitate

Web Results 1 - 10 of about 6,640 from thisisms.com for I'm in a wheelchair

They kind of over-shadow talk of miracles... I think we need more miracles. (and I just bumped up the Google results by two - not counting it as it appears in not a miracle.)
My name is not really Johnson. MSed up since 1993
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Postby 1eye » Fri Dec 03, 2010 5:09 pm

oreo wrote:The testers would never put a real human life in that much danger.


Besides, that's why God made mice, isn't it? (If not for the humourless reactions, I would think this thread should be combined with another labelled "satire".) I thought it was funny, anyway.

Maybe these trials can be combined with flat-wheeled chair races and perhaps the special breed of mouse that was developed for those trials can participate. Any stories of survival of falls from great heights are purely anecdotal, and could easily be due to placebo effects.

There are a lot of shysters out there trying to make a fast buck off of those poor mice that must use crutches, and from the ones who have to flap their arms very quickly when falling from airplanes. Caveat canem, or something.
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Postby fernando » Sat Dec 04, 2010 8:58 am

concerned wrote:The only stance I have is that I don't like telling sick, desperate people that something is a miracle cure without any science to back up the statement.


Again, nobody sticks a catheter up his/her own groin. Decisions are made WITH doctors and some of them are the very best in their field.
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Postby concerned » Sat Dec 04, 2010 9:01 am

Certainly, some of these doctors who are "the very best in their field" are saying the science just isn't there and that RCT's are needed to see if "Liberation" has any benefit.
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Re: IT IS A FACT

Postby 1eye » Sat Dec 04, 2010 9:13 am

Gordon wrote:Everyone who ate carrots in the 1800's are dead... Fact


Those are very old carrots. Definitely outdated. For that reason alone, I would avoid them. Sorry, but those nineteenth century deaths are *all* just anecdotes.

"5,6,7, open up pearly gates. There ain't no time to wonder why, whoopee..."

Those anecdotes have on occasion been greatly exaggerated.
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Postby fernando » Sat Dec 04, 2010 9:33 am

concerned wrote:Certainly, some of these doctors who are "the very best in their field" are saying the science just isn't there and that RCT's are needed to see if "Liberation" has any benefit.


My friend you keep moving the line. Let's get to the first comment: It is not that there is "no science" behind CCSVI, it is a matter of debate right now - that what science is. And in this debate there are top doctors on both sides. Haacke for example.

In the meantime people make choices and the DOCTORS are who intervene.
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Postby CCSVIhusband » Sat Dec 04, 2010 11:01 am

fernando wrote:
concerned wrote:Certainly, some of these doctors who are "the very best in their field" are saying the science just isn't there and that RCT's are needed to see if "Liberation" has any benefit.


My friend you keep moving the line. Let's get to the first comment: It is not that there is "no science" behind CCSVI, it is a matter of debate right now - that what science is. And in this debate there are top doctors on both sides. Haacke for example.

In the meantime people make choices and the DOCTORS are who intervene.


You got the part about moving the line right ... as I've always asked, when is it EVER going to be enough?

It won't be ... and there's a reason they keep moving the line. It's easier that way if you have an agenda or already formed notion ... but again the evidence will continue to mount through 2011 (animal model studies, double blind studies, more and more knowledge, doctors, forums, procedures, results) ... the tidal wave is building ... it will crash down on these skeptics soon and leave them waiting in LONG lines of people hoping to be liberated.

Dead on Fernando.
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