Placebo?

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

Placebo?

Postby sou » Sun Oct 24, 2010 12:08 pm

This is not scientific in any way. Just yet another testimonial:

A friend of mine went for angiography after having been diagnosed with CCSVI using ultrasound. The angiography came up clear. No obstructions.

Strange? Well, it is. But that is half the story. My friend went back home and the following days started having some strange feelings of heat in his arms, less fatigue and less brain fog.

A few days later, he went back to hospital to finalize some paperwork. He told the surgeon about these positive feelings. The surgeon, very inexperienced at that time, told him that he found it quite difficult to enter the IJVs with the catheter. He speculated that there could be some membranes which were broken when the catheter entered the veins.

This speculation was, later, confirmed by ultrasound. The venous insufficiency was a lot better and some pieces of the membranes were now clearly seen moving as the blood flowed.

My friend, without knowing that he was liberated, felt immediately some positive changes. This is interesting because it can't be due to a placebo effect.

I just wanted to share it with all of you.
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Postby Cece » Sun Oct 24, 2010 12:22 pm

That is some good testimony. I can imagine too the disappointment after going in for this and having nothing found. Congrats to your friend on his accidental liberation!
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Postby Woozie » Sun Oct 24, 2010 12:51 pm

interesting, especially with the placebo effect in mind. :D
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Postby David1949 » Sun Oct 24, 2010 1:38 pm

Does an accidental liberation cost less than a deliberate one? :lol:

BTW I think the placebo effect is overstated. If it can cause such dramatic results as some folks experience after liberation then why don't they just sell us some placebo pills and call it an MS cure.
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Re: Placebo?

Postby scorpion » Sun Oct 24, 2010 1:51 pm

sou wrote:This is not scientific in any way. Just yet another testimonial:

A friend of mine went for angiography after having been diagnosed with CCSVI using ultrasound. The angiography came up clear. No obstructions.

Strange? Well, it is. But that is half the story. My friend went back home and the following days started having some strange feelings of heat in his arms, less fatigue and less brain fog.

A few days later, he went back to hospital to finalize some paperwork. He told the surgeon about these positive feelings. The surgeon, very inexperienced at that time, told him that he found it quite difficult to enter the IJVs with the catheter. He speculated that there could be some membranes which were broken when the catheter entered the veins.

This speculation was, later, confirmed by ultrasound. The venous insufficiency was a lot better and some pieces of the membranes were now clearly seen moving as the blood flowed.

My friend, without knowing that he was liberated, felt immediately some positive changes. This is interesting because it can't be due to a placebo effect.

I just wanted to share it with all of you.


No obstructions yet ultrasound confirmed what? huh?
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Postby jimmylegs » Sun Oct 24, 2010 2:01 pm

at first read, my understanding of the post is that the testing procedure had broken/cleared obstructions without detecting them at first.
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Postby scorpion » Sun Oct 24, 2010 2:34 pm

jimmylegs wrote:at first read, my understanding of the post is that the testing procedure had broken/cleared obstructions without detecting them at first.


So the procedure broke up obstructions that were never detected?
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Postby Cece » Sun Oct 24, 2010 2:43 pm

They were detected by the initial doppler testing. They were not found during the catheter venogram. Unexpected improvements led to a follow-up doppler, which showed the ccsvi that had been present during the initial doppler had now been fixed.
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Postby scorpion » Sun Oct 24, 2010 2:53 pm

Cece wrote:They were detected by the initial doppler testing. They were not found during the catheter venogram. Unexpected improvements led to a follow-up doppler, which showed the ccsvi that had been present during the initial doppler had now been fixed.


Gotcha CeCe, Thanks.
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Postby sou » Sun Oct 24, 2010 8:02 pm

David1949 wrote:Does an accidental liberation cost less than a deliberate one?


Yes, it did. Since no more equipment and tools were used, my friend was charged a simple venogram. Nevertheless, he will have to properly clear up the veins sometime in the future.

Cece and JL, that's exactly what happened. My apologies for my English.
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Postby MegansMom » Tue Oct 26, 2010 6:54 am

This is a very interesting and it corresponds with what my daughter's IR found in his patients so far.

I asked him that now that he has done a fairly good number of patients, what was his success rate. Was he seeing many patients improve?



He said that in the patients that he has done venograms on 80% had lesions that he could identify.

But he further stated that oddly enough, most of the other 20% (the ones without identified lesions) have shown clinical improvement too.

He at first thought that this was placebo but now he thinks that maybe they had paritial obstructions that could be missed. He says he inflates the balloon anyway.

Some of these improvements have been objective and measurable.....
strength, vison etc. Not just subjective improvements.

I asked him what he thought was the cause, he said perhaps fine webs but honestly shrugged and said he didn't know.

I guess tha bottom line is.......improvements are great even if the exact vessel lesion & cause eludes identification.

I am wondering if some of the "sham" study patients that are in the sham part 1/3 will see improvements due to the catheter wire or dye opening up the vessel enough to improve venous flow?
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Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby eric593 » Tue Oct 26, 2010 9:23 am

MegansMom wrote:This is a very interesting and it corresponds with what my daughter's IR found in his patients so far.

I asked him that now that he has done a fairly good number of patients, what was his success rate. Was he seeing many patients improve?



He said that in the patients that he has done venograms on 80% had lesions that he could identify.

But he further stated that oddly enough, most of the other 20% (the ones without identified lesions) have shown clinical improvement too.

He at first thought that this was placebo but now he thinks that maybe they had paritial obstructions that could be missed. He says he inflates the balloon anyway.

Some of these improvements have been objective and measurable.....
strength, vison etc. Not just subjective improvements.

I asked him what he thought was the cause, he said perhaps fine webs but honestly shrugged and said he didn't know.

I guess tha bottom line is.......improvements are great even if the exact vessel lesion & cause eludes identification.

I am wondering if some of the "sham" study patients that are in the sham part 1/3 will see improvements due to the catheter wire or dye opening up the vessel enough to improve venous flow?


This would really mess up the benefits attributed to the placebo group and erroneously inflate the placebo effect instead of acknowledging an actual benefit that resulted from removal of an unobserved obstruction. That would be unfortunate.
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Postby Cece » Tue Oct 26, 2010 9:34 am

eric593 wrote:
MegansMom wrote:I am wondering if some of the "sham" study patients that are in the sham part 1/3 will see improvements due to the catheter wire or dye opening up the vessel enough to improve venous flow?


This would really mess up the benefits attributed to the placebo group and erroneously inflate the placebo effect instead of acknowledging an actual benefit that resulted from removal of an unobserved obstruction. That would be unfortunate.

Very unfortunate. It's been discussed here before without any solutions. But what percentage of CCSVI are membranous sorts of things that could break with just a catheter going through? We don't have the numbers yet. Maybe it is too few to be a factor.
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Postby eric593 » Tue Oct 26, 2010 9:49 am

Cece wrote:Very unfortunate. It's been discussed here before without any solutions. But what percentage of CCSVI are membranous sorts of things that could break with just a catheter going through? We don't have the numbers yet. Maybe it is too few to be a factor.


And maybe this is why Dr. Sclafani is right... too soon for double blinded studies in this. The doctors have more to learn before we're ready to cover their eyes.
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Double blind studies are possible ?

Postby MarkW » Wed Oct 27, 2010 8:03 am

I am with Prof Sclafani on this. Double blind studies are stupid at this stage as a validated diagnosis method is not agreed. I cannot get my head around how a double blind study would be designed. Anyone try to explain what the study design would be.

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http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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