Is CCSVI for real....here is another way to find out...

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

Is CCSVI for real....here is another way to find out...

Postby codefellow » Tue Jul 13, 2010 8:45 am

I have an idea for another approach to a blinded study, one that seems a lot simpler than the current approach, I wondered what you guys think.

Take the appropriate venograms, or what ever the gold standard is, for say, 100 people, only 10 of whom have MS. All the patients are assigned some code number known only to the researchers.

Send the 100 venograms to a few IR specialists trained in diagnosing CCSVI and see if from the 100, they correctly identify the 10 MS patients.

If they are successful, would that not conclusively prove a link between CCSVI and MS?
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Postby TMrox » Tue Jul 13, 2010 9:05 am

Well, from the 90 without MS, some might give positive for CCSVI. At least that is what Buffalo Univ found. CCSVI among healthy controls, people with CIS, and other conditions (neurosarcoidosis, epilepsy, Hashimoto).
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Postby cah » Tue Jul 13, 2010 9:08 am

I think this is more or less what Dr. Zamboni did. While his treatment study wasn't blinded, his diagnosis study was.
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Postby concerned » Tue Jul 13, 2010 9:14 am

But if operater skill is essential to weed out both false negatives and false positives, the accuracy of the scans could be questionable.
EDIT: I suggested something like your idea once but people here didn't like it.


I say give 10 people sham treatment under propofol, but don't tell them it's part of a study. If even one of them reports miraculous results then I think that would be a sign to halt treatments being done outside of studies and reevaluate the theory. If nobody reports improvements give them the real treatment.
Last edited by concerned on Tue Jul 13, 2010 9:16 am, edited 2 times in total.
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Postby Cece » Tue Jul 13, 2010 9:14 am

I think your idea could work. Want to post it in Dr. Sclafani's thread and get his opinion?
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Miraculous results

Postby fiddler » Tue Jul 13, 2010 9:31 am

concerned, the possibility that someone in your "sham procedure" study would have a miraculous recovery would hardly prove liberation to be ineffective or should be stopped, only that some people CAN improve due to placebo effects, something that has been known for decades.

Seeing no significant difference over many years WOULD show liberation to be ineffective, much in the same way that the latest long-term studies on CRABs (in the UK, Canada) have shown that these drugs are not significantly effective and therefore are no longer prescribed... oh, wait, they have been showed to be ineffective but ARE still prescribed... my bad!

...Ted
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Postby concerned » Tue Jul 13, 2010 9:34 am

My mother doesn't take CRAB drugs and I don't like the pharmaceutical industry, save some infrequent recreational usage of their products and Zantac for ulcers.

Loads of people here think that it's impossible for results we've seen to be placebo. If we saw results like that from a placebo, we would know it is certainly possible and should be looked into more clearly.

P.S. -- somebody here described the placebo effect in magickal terms ("mind over matter") but a more rational definition would be "CNS over CNS, PNS, organs and limbs".
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Re: Miraculous results

Postby concerned » Tue Jul 13, 2010 9:49 am

fiddler wrote:concerned, the possibility that someone in your "sham procedure" study would have a miraculous recovery would hardly prove liberation to be ineffective or should be stopped, only that some people CAN improve due to placebo effects, something that has been known for decades.


I didn't say anything about proving liberation inneffective or that it should be stopped altogether, just performed in controlled studies to test effectiveness which, besides the upcoming BNAC trial with it's small sample size. Imagine if everyone going overseas would partake in one big trial how clearer a picture we'd get.
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And if pigs had wings, they could fly

Postby fiddler » Tue Jul 13, 2010 10:06 am

There are no large-scale treatment studies being done in North America, and no likelihood that they will start soon. For now, treatments aren't even being allowed for compassionate reasons. If/when they do allow treatments to go ahead in NA, there will be 1/2 million people on the waiting list. Can't you see 499,000 MSers waiting patiently while a "large" group (1000 people would be a huge study) is carefully treated, then follow-up done for, say, five years?
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Re: And if pigs had wings, they could fly

Postby Cece » Tue Jul 13, 2010 11:38 am

fiddler wrote:For now, treatments aren't even being allowed for compassionate reasons.

This is true in Canada but treatments are happening in the US. Dr. Hubbard's study kicked off this week. The Albany docs are performing 100 liberations a month! Other under-the-radar docs are on this as well.
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concerned also: fraud treatments and magickal rationality

Postby 1eye » Tue Jul 13, 2010 12:08 pm

concerned: I am concerned that whoever you are, you do not sound very concerned. I am afraid of what you do sound like. What sounds like it matters to you more is that you have an opportunity to be in on some sham scam. How would one patient out of ten be of significance to any discussion? It begins to sound like toothpaste commercials of old, where we heard the common statistic about that proportion of people. Except in those, only swaying buying masses by the latest sales technique was intended.

I say give 10 people sham treatment under propofol, but don't tell them it's part of a study.


I am getting very concerned about the ethics of this wee discussion. Have you also talked to the police department about this? Why don't we, while we're at it, advertise a cure for cancer, starting with ten people, and give them each a pacemaker? If anyone claims to be cured of cancer, we will have proven placebo exists!

Please tell me this is a joke. I do not want my opinion of my fellow human beings to be so low. Why don't I see any smiley faces? If this is some king of social-networking form of entrapment I don't find it funny.

I think people who have some form of ethical morality should be the only ones allowed within a hundred miles of a scientific study. Some people around here are beginning to sound, shall we say, more sadistic than scientific?

I could be wrong. It might be just the latest criminal fad, like date-rape. You really should consult with your local law enforcement first. I knew all the states had different laws, but wow!

I am getting to be very concerned for your mother. Another thing that scares me is that your obvious preference for, and belief that the CNS is the most important "part" of the body, leads me to think that you think that it has some kind of "magickal" power over the rest, via the famous placebo effect, or perhaps by design.

P.S. -- somebody here described the placebo effect in magickal terms ("mind over matter") but a more rational definition would be "CNS over CNS, PNS, organs and limbs".


Sounds more like walking upright. Why can't other animals do this magick? Has the brain evolved so far as to be able to perform feats of healing never seen in 150 years? Amazing. And I thought *I* didn't get out much!

:evil:
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'MS' is over - if you want it
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Postby codefellow » Tue Jul 13, 2010 12:14 pm

Cece wrote:I think your idea could work. Want to post it in Dr. Sclafani's thread and get his opinion?


I have been following his thread with great interest, but it looks like the poor man really has his hands full. If I can get my questions answered without bothering him, that is what I am going to do!
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Re: concerned also: fraud treatments and magickal rationalit

Postby concerned » Tue Jul 13, 2010 4:35 pm

1eye wrote:concerned: I am concerned that whoever you are, you do not sound very concerned. I am afraid of what you do sound like. What sounds like it matters to you more is that you have an opportunity to be in on some sham scam. How would one patient out of ten be of significance to any discussion? It begins to sound like toothpaste commercials of old, where we heard the common statistic about that proportion of people. Except in those, only swaying buying masses by the latest sales technique was intended.

I say give 10 people sham treatment under propofol, but don't tell them it's part of a study.


I am getting very concerned about the ethics of this wee discussion. Have you also talked to the police department about this? Why don't we, while we're at it, advertise a cure for cancer, starting with ten people, and give them each a pacemaker? If anyone claims to be cured of cancer, we will have proven placebo exists!

Please tell me this is a joke. I do not want my opinion of my fellow human beings to be so low. Why don't I see any smiley faces? If this is some king of social-networking form of entrapment I don't find it funny.

I think people who have some form of ethical morality should be the only ones allowed within a hundred miles of a scientific study. Some people around here are beginning to sound, shall we say, more sadistic than scientific?

I could be wrong. It might be just the latest criminal fad, like date-rape. You really should consult with your local law enforcement first. I knew all the states had different laws, but wow!

I am getting to be very concerned for your mother. Another thing that scares me is that your obvious preference for, and belief that the CNS is the most important "part" of the body, leads me to think that you think that it has some kind of "magickal" power over the rest, via the famous placebo effect, or perhaps by design.

P.S. -- somebody here described the placebo effect in magickal terms ("mind over matter") but a more rational definition would be "CNS over CNS, PNS, organs and limbs".


Sounds more like walking upright. Why can't other animals do this magick? Has the brain evolved so far as to be able to perform feats of healing never seen in 150 years? Amazing. And I thought *I* didn't get out much!

:evil:


I don't really get what your saying. I'm not a doctor and I can't perform studies so I don't need to talk to any police. I loathe doing so anyway.
I didn't mean that a study like that would discredit CCSVI, I said it could determine whether some of the effects being reported could be placebo, which many claim here is impossible. Your selective quoting left out the part where I said if no one shows "miraculous" results, they should all get the real procedure. I think a study as such would be at least as ethical as performing an unproven operation outside of a clinical study. But I'm no medical ethics person.


I think the CNS is probably the most important part of the body, and I think because of my CNS, so I think this seems to be true. (I think I think therefor I think I am.)

I see you live in Ottawa, if you don't believe that I'm 26 years old and unemployed, you can meet me in a public place somewhere if you want. I think my appearance, cleanliness (or lack thereof) and disability bus pass could put your mind at ease if you think I'm secretly a neuro or something. I don't think many neurologists ride the bus, or are on ODSP.

And yes, I am very concerned about my mother, which is why I spend 3-4 hours a day taking care of her.


P.S. --- I am a fan of de Sade, and as Nietzsche was fond of saying, "We amoralists..." But didn't de Sade run in front of a horse and carriage to save a baby? and didn't Nietzsche go mad after seeing a man floggin a horse? Yes, I think we amoralists can be a compassionate bunch.
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Postby beerduff » Tue Jul 13, 2010 10:55 pm

Seeing that i am a rocket scientist.
How about we just take two people from each large medical centre in the world.
These people will have primary progressive ms.
Lets start this week shall we, let's say this Friday.
There is your study
Thank you
If you need any more earth shattering ideas just ask.
Also while i am having my brain storm.
Any Canadian Vascular Surgeon's that might be just passing through
Your silence is deafening
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Postby concerned » Tue Jul 13, 2010 11:06 pm

???????????????????????????????????????
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