double blind research buffalo

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

Postby Algis » Thu Jul 22, 2010 2:01 am

For what it worth and for the sake of advancing the topic is: when I was at University; every buck counted... So now and then I was enrolled as a guinea pig in a pharmacology unit of an University's Hospital. (in Europe)

There were medication (I only got meds; never ever any 'procedure' or so) and even the nurses; Doctors, data analysts did not know which was real; which was placebo.

We had a number; pills arrived from an attorney's office in bags/pots/syringes/vial/whatever with our number on it.

We follow the "treatment" then had a truckload of tests; blood; urine but mostly attention deficit, concentration, sometimes EEG or EKG. Data were sent back to the attorney's office.

We got paid (quite well) and I never knew what medicine / sickness or if I got placebo or real meds. I never got results either. But at that time I could go to the hospital anytime and get a free consultation/analysis if I felt anything wrong with me; with that ID of the pharmacology's unit.

That was back in the beginning of 80's - It might have changed now... But thought I could share that here.
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Postby costumenastional » Thu Jul 22, 2010 2:05 am

The only way for the patient to know if he/she was treated is the pain. You cant be under general anesthesia for this kind of procedure. Not in a trial at least. General anesthesia carries great risks so it s out of the question.
So, if one does not feel a think apart from some slight tingling due to catheter's movement during the procedure he is not "liberated". Balloon dilatation comes with some short of pain. In my case pain in left jug and azy was significant.

On the other hand, they ballooned my right jug where my stenosis was like 30% or something. I didn't feel a think just like the surgeon predicted. But after a week or so, it started feeling weird. Like scratching. It remains still, 3 months out.

In other words, there is no way that patients wont be able to tell if they got angio. Except if Petrov is the only surgeon that makes his patients hurt. Even if they feel SOME pain days post op it means that balloon dilatation took place. Catheter doesn't result in any kind of pain on its own.

Veins hurt people. At least when something tries to open them ;)
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Postby joge » Thu Jul 22, 2010 2:12 am

I had the procedure done in Belgium under general anesthesia, not as part of a trial, by the way (I hope... :? ).

I didn't have any pain afterwards, even thow two jugs were openend up to 14mm. Before they were closed for about 90 percent. No pain at all.

The only thing I could feel is a slight irriation, days after, when wearing my seatbelt. Thats it. Great results by the way.

So.. maybe it IS possible to give someone the idea he is treated...?
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Postby Cece » Thu Jul 22, 2010 8:14 am

1eye wrote:But constantly repeating the same negative message about CCSVI and Liberation is one thing. I think another purpose (as witness the 'concerned' post, above) is to disrupt. I think my words were suitably twisted, and if I hadn't noticed it he would have got away with completely high-jacking a discussion that had originally been quite an innocent query about Buffalo, in a failed attempt to get a rise out of me.

I forget the name of the rhetorical tactic or fallacy, but concerned has used the one where you exaggerate your opponent's stance into something ridiculous and then -- is it the straw man? -- knock down the ridiculous thing you are claiming your opponent is saying.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby concerned » Thu Jul 22, 2010 8:38 am

removed to prevent further stuff.
Last edited by concerned on Thu Jul 22, 2010 8:46 am, edited 1 time in total.
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Postby concerned » Thu Jul 22, 2010 8:44 am

ALSO --- I'm sorry I said what I said with a paraphrase from 1eye, but other people have said the same thing outside of our discussion and I think it has relevance to the thread. And again, I'm not a medical researcher or ethicist so my idea for a trial is just that, my idea. To say that it is my agenda is pretty far fetched.
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Postby fogdweller » Thu Jul 22, 2010 9:32 am

Cece wrote:
drsclafani wrote:As i said, i cant even figure out how to take a minimally invasive procedure that can be done under local anesthesia and put patients under general anesthesia so that they cannot tell whether they are treated or not. Hard to imagine an IRB committee agreeing to that one. I find it inhumane at this point.

And then he has been proven wrong, by the IRB at Buffalo at least! The problem is the treating by general anesthesia when local anesthesia is all that's needed. The general anesthesia is just to obscure whether a procedure is done or not.


Cece, are you sure that Buffalo proposes to do this under general anesthesia? I looked on line for their protocol and couldn't find it. Frankly there would be no reason to use general anesthesia. The catheter is being inserted in both test and placebo subjects; they wouldn't know which had the balloon inflated, and the follow-up doctor would not either, ergo the double blind. Plus I think one of the substances routinely administered with sedation is a substance that induces amnesia ... you don't remeber what happened. I doubt Buffalo is using general ansthesia.
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Postby Cece » Thu Jul 22, 2010 10:53 am

fogdweller, thank you...I felt sure about the general anesthesia but I cannot find it anywhere either! Now I think I made an assumption that this was what they are doing but that it is unknown...unless anyone has better information?

Sorry for the misinformation, I will edit that so it doesn't spread further.
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Postby 1eye » Thu Jul 22, 2010 10:56 am

When I had my stents put in, I was sedated. I think they don't do it if you look like you don't need it. I did. I think they usually have a broad choice, but I got a whack of valium. No general, but it makes you sleep. No nerves in arteries (or veins), so no pain. Balloons were inflated and stents unrolled. All in all it went fine, and I'm pretty sure he stuck the catheter way down over my knees, but I didn't ask him what he was doing.

There was also a guy coming out as I was going in, who said "It's a piece of cake." or words to that effect. He seemed like the kind of guy who might have tried it without anaesthesia, but I think they sedate everybody there because it's easier on the ticker. So he probably would have said it was a piece of cake if they had cut his foot off.

You can tell something is going on when you are ballooned and stented. I wouldn't try that on a conscious patient if they were not expecting it. But you might be able to sleep through it, and if you were in deep enough sleep, one could make some incision that looked real. The cooperation of the patient is needed for the bandaging, where I had it. You were wheeled lying down to a station where they put pressure on the site, by putting you inside the sharp jaws (well, OK, they were quite dull jaws) of a kind of clamp which kept on the pressure long enough for you to be bandaged.

Of course if you used the right chemical(s) your subject would be asleep and remember nothing. I think in real operating theatres it is a trade-off between waking the guy up when necessary and minimizing the pain and anguish. I had my gall bladder out and the anesthetist told me he'd probably be giving me about 10 drugs. That was for general anesthesia, but I think even the valium is given by one of those specialists.

I think you should have one in on any operation, just in case. But I have had them without. Most tooth procedures are without, but dentists don't tend to get creative with that. If you need something powerful I think you need a specialist. That's just my opinion.

If what is administered gives you a pleasant enough buzz, you will not care what just occurred. In the last few... years even... your whole life, up till now... Oh, wait, am I Liberated? Oh, good... I feel freer... Wonder what's on TV... pause...
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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answer

Postby joge » Thu Jul 22, 2010 10:59 am

So, still no definitive answer to my initial question.. :?
How is it done exactly in Buffalo...?
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Postby Lyon » Thu Jul 22, 2010 11:02 am

...
Last edited by Lyon on Tue Jun 21, 2011 3:47 pm, edited 1 time in total.
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Postby CCSVIhusband » Thu Jul 22, 2010 11:33 am

SOOOOOOOOO ... Lyon will lock in someone else's statements, but when you question his (and don't "lock them in") he deletes them.

Seems reasonable ...

I'm with you 1eye ... I know a lot of others are as well.

Since they have no interest in discussing CCSVI (where have they ever actually discussed it in a way that seemed like they were interested?) ... why do they come here?
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How is the Buffalo study going?

Postby nicknewf » Thu Jul 22, 2010 11:45 am

Does anyone here have any insight into how the Buffalo study is going? I read that the first 10 were treated and they had moved to the blinding phase. Did the next 20 get the blinded maybe yes/maybe no treatment?

I am excited by the prospect that there will be at least some solid evidence (albeit only 20 patients) on the placebo effect of Liberation within a year - maybe sooner.

Re "patientx, malden, scorpion, Lyon, and concerned" - everyone has a right to be heard, and I think they have been. I'm an not sure what makes "patientx, malden, scorpion, Lyon, and concerned" so extremely cautious - CCSVI seems like the real deal - but a little hubris goes a long way. If I was "patientx, malden, scorpion, Lyon, and concerned", which I am not, I would feel beset upon in here. Hopefully, the Buffalo study provides some of the answers which convince "patientx, malden, scorpion, Lyon, and concerned" that CCSVI is at least beneficial, not purely a placebo, and a worthwhile treatment option for the people "patientx, malden, scorpion, Lyon, and concerned" are trying to help.
I'm sure that "patientx, malden, scorpion, Lyon, and concerned" would agree any I told you so to the effect that CCSVI is real would be a welcome one.

Fingers crossed that we get this proof sooner rather than later.
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Postby ikulo » Thu Jul 22, 2010 12:12 pm

Could we just start a sticky thread where everyone makes childish accusations toward one another so that innocent bystanders like the original poster in this thread are relieved of these antics? It takes two to tango, and both parties are at fault here. For the good of the group, either take it outside or leave it at the door. This group is being ruined by BOTH sides of this game, at it's really just getting annoying and embarrassing.
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Postby joge » Thu Jul 22, 2010 12:23 pm

Great!

So, back to the question: Buffalo..

Please enlighten me!
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