Why "CCSVI" is Surreal

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

Postby griff » Mon May 09, 2011 1:54 am

@happypoet
Thanks for your comment. :) I found the article on the net and not in tims. I did not know dr Rose before, but I respect his opinion just like I do yours

I think dr Rose's comments induced so many valuable answers from all of you that I must say it was already worth coming out with this initial post.
User avatar
griff
Family Member
 
Posts: 95
Joined: Fri Mar 25, 2011 4:00 pm

Advertisement

Re: us?

Postby griff » Mon May 09, 2011 2:05 am

I think we got lots of very valuable posts here that I would like to thank all of you. I can see many of you put lots of work in it that I really appreciate it. This is what an 'opposing article' can result in. :)
User avatar
griff
Family Member
 
Posts: 95
Joined: Fri Mar 25, 2011 4:00 pm

Postby MegansMom » Mon May 09, 2011 5:18 am

@scorpion
I just want to point out that it was long held that the MS lesions were thought to cause MS symptoms. But this was a bit flawed in that the locations of lesions does not correspond with the locations of the symptom functions.

A good example is when they know a specific location of. Function - like vision or speech centers and the person has no eye or speech symptoms but other equally devastating symptoms but not " matching up " as neuro surgeons do. also lesion load never correlated with degree of infirmary.

Now they think that the lesions are " incidental" and that hypoperfusion and inflammation and deterioration over time cause the disabling symptoms.
It's tissue gray and white matter- all cells including axon and glial cell damage that cause the symptoms.

These findings are from neurology sources not CCSVI. Although CCSVI researchers are seeing the same results.

Also perfusion can be improved fast if the involved tissue is starved but not dead. Thus the symptom recovery can be quite dramatic and fast.

Lesions may just merely be the body "Sandbagging" the tiny vessels to reinforce them from refluxing flow. They are merely fibrous rings around tiny veins.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
User avatar
MegansMom
Family Elder
 
Posts: 200
Joined: Sun Aug 22, 2010 3:00 pm
Location: Central FL ( near Ocala)

Postby colros » Mon May 09, 2011 5:41 am

Today the Globe and Mail started a series that I would highly recommend:

http://www.theglobeandmail.com/life/hea ... 800/page1/

Remember that the Globe and Mail is part of CTVglobemedia that started the fad with their reports in November, 2009 trumpeting the "breakthrough" in treatment for MS.

BTW, cheerleader, Zamboni admits that his original study was unblinded.

"In the beginning, Dr. Zamboni agreed with this criticism, admitting in his 2009 paper that not making [it] blind was a “major shortcoming” and “there is a great possibility that bias could be playing an important role.”
User avatar
colros
Family Member
 
Posts: 35
Joined: Mon Nov 23, 2009 4:00 pm
Location: Montreal, Quebec, Canada

Postby frodo » Mon May 09, 2011 7:01 am

@colros

CCSVI condition is DEFINED as two out of five doppler-confirmed possible reflux, regardless of their pathological origin. Any of those possible reflux are normal and documented in healthy population.

Statistically it is necessary that exist some people with a condition defined like this. In fact, CCSVI defined this way has been reported even in healthy people.

Maybe you are using a different definition for CCSVI. Maybe I am wrong about the definition I have used. In any of these cases I would like you to explain further your position so that we can reach an agreement.
User avatar
frodo
Family Elder
 
Posts: 1030
Joined: Wed Dec 02, 2009 4:00 pm

Postby colros » Mon May 09, 2011 7:27 am

Veins are not like arteries. Whereas arteries have to get blood to specific parts of the organs, veins (except for the portal circulation) only need to get blood back to the heart and act as reserve reservoirs in the case of hemorrhage. So there is normally a large variation in venous anatomy and flow patterns. Zamboni, in his UNBLINDED study chose to associate some of these patterns with MS in those patients for whom he knew the diagnosis. Since then, numerous other properly BLINDED studies using ultrasound or MRI have failed to show any difference in head and neck venous anatomy or flow between MS patients and normal subjects. "CCSVI" as a disease does not exist. It merely describes some of the normal variations in venous anatomy and flow patterns.
User avatar
colros
Family Member
 
Posts: 35
Joined: Mon Nov 23, 2009 4:00 pm
Location: Montreal, Quebec, Canada

Postby frodo » Mon May 09, 2011 7:35 am

I agree in everything you said. Therefore we can say that CCSVI as defined by Zamboni is a condition that exists, but it is currently unknown if it can be considered a disease at all.

Do we agree in this?
User avatar
frodo
Family Elder
 
Posts: 1030
Joined: Wed Dec 02, 2009 4:00 pm

Postby colros » Mon May 09, 2011 8:08 am

I would go further and say that beyond a reasonable doubt "CCSVI" is not a disease and, consequently, "liberation" is useless in treating the pathology of MS.
User avatar
colros
Family Member
 
Posts: 35
Joined: Mon Nov 23, 2009 4:00 pm
Location: Montreal, Quebec, Canada

Postby cheerleader » Mon May 09, 2011 8:22 am

Here is the original study, which I brought to Stanford University---it was published on line December 5, 2009 and it was BLINDED:

Methods: Sixty-five patients affected by CDMS, and 235 controls composed, respectively, of healthy subjects, healthy subjects older than CDMS patients, patients affected by other neurological diseases and older controls not affected by neurological diseases but scheduled for venography (HAV-C) blindly underwent a combined transcranial and extracranial colour-Doppler high-resolution examination (TCCS-ECD) aimed at detecting at least two of five parameters of anomalous venous outflow. According to the TCCS-ECD screening, patients and HAV-C further underwent selective venography of the azygous and jugular venous system with venous pressure measurement.


http://www.fondazionehilarescere.org/en ... zioni.html

This is what Dr. Dake read, and then met with Dr. Zamboni. This is why he checked my husband on MRV and found he had severly occluded jugular veins and stenotic left dural sinus... 3D time of flight images showed severly impeded blood leaving his brain, especially thru the left side ---where blood was refluxing into his deep cerebral veins.

Dr. Dake speaks about CCSVI and what he has found around the world---and I would listen to him anyday

Here is Dr. Michael Dake at the SIR Meeting

http://www.youtube.com/watch?v=adbVIR1h7h8

only time and INDEPENDENT research will clarify the connection between slowed venous drainage and MS, and it may NOT affect every pwMS...but for my husband, it has restored his brain, cognition and ability to function.

cheer
Last edited by cheerleader on Mon May 09, 2011 8:24 am, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5358
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby colros » Mon May 09, 2011 8:49 am

You have not read the Zamboni paper carefully. I gave you the quote from the methods. After doing the ultrasounds he made an UNBLINDED selection of MS patiens in which to do the venography. He admits himself that the study was unblinded. Why do keep insisting it was blinded?

Dr. Dake has never done any properly controlled study proving that "CCSVI" even exists and stands to make $millions if he is ever allowed to do "liberation" again. As such his opinion on its existence is worthless. There is zero scientfic proof that Dake`s "liberation" of your husband did the slightest good. Anecdotal evidence is not science.
User avatar
colros
Family Member
 
Posts: 35
Joined: Mon Nov 23, 2009 4:00 pm
Location: Montreal, Quebec, Canada

Postby frodo » Mon May 09, 2011 10:34 am

@colros

I assume that "I would go further" means "I agree and I would go further". Therefore I would appreciate that from now on, you will say "CCSVI does not exists as a disease" instead of using your usual and ambiguous sencence "CCSVI does not exists".

And I say that your sentence is ambiguous because CCSVI exists as a condition and several papers exists naming it. Some of them claim that the condition is a disease and some others claim that it is not. But nobody except you claims that the condition does not exists.

About your last sentence (beyond a reasonable doubt "CCSVI" is not a disease), you still have to justify it. Do you have any reference?

Regards,
Frodo.
User avatar
frodo
Family Elder
 
Posts: 1030
Joined: Wed Dec 02, 2009 4:00 pm

Re: personal ban

Postby scorpion » Mon May 09, 2011 12:08 pm

Dr. Rose I have been one of the "skeptics" of CCSVI but I will have to say there are scientists that believe CCSVI is a possibility. You are sharing YOUR perspective on the science(or lack of) of CCSVI but there are others that may see the "facts" quite differently.
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby colros » Mon May 09, 2011 12:36 pm

@frodo

For references see my latest blog

http://medicalmyths.wordpress.com/2011/ ... is-a-hoax/

Let's agree that "CCSVI" means "normal variation in head and neck venous anatomy and flow". By definition, then, it is not a disease.
User avatar
colros
Family Member
 
Posts: 35
Joined: Mon Nov 23, 2009 4:00 pm
Location: Montreal, Quebec, Canada

Postby Asher » Mon May 09, 2011 1:25 pm

Dr. Rose, Zamboni is in good company:

The amazing case of N-Rays

To understand how N-rays came about, we need to go back to the late 18th century and consider the cultural milieu of the time. The major European nations had their chests puffed out with pride: they were great and they knew it. Each was so great that they were convinced that they were greater than any of the others. National pride itself was even something to take pride in and polish up on Sundays like some classic car.
Scientists were a part of this, and national pride provided a significant motivation for their work. The UK was very happy with the likes of Faraday, Maxwell, and others, while the Germans had Hertz, Plank, and Roentgen, who had just discovered X-rays. The French may have felt a little left out in all of this, because, although they were making major contributions, they hadn't made as big of a splash as, for instance Roentgen and his X-rays.

That is, they hadn't until Prosper-René Blondlot announced the discovery of N-rays. He was immediately famous in France, and very shortly afterwards, researchers from around the world confirmed that they too had seen N-rays. N-rays were an ephemeral thing: observed only as a corona around an electric discharge from certain crystals. They were only observed by the human eye, making them difficult to quantify.

But not everyone was convinced. Many researchers outside of France were suspicious of the number of claims coming from French labs for the properties of N-rays. In the end, an American scientist Robert Wood visited the lab of Blondlot to see it for himself. During one of the experiments he surreptitiously removed the crystal that supposedly generated the N-rays, after which Blondlot failed to notice the absence of N-rays. The N-rays failed to vanish when their source was removed.

You might think that the story ends there, but it doesn't. National pride was such that some French researchers continued to publish research on N-rays in French journals for a number of years. If we look back, we can see how the N-ray fiasco developed—the French needed something stranger and more useful than X-rays. But we can also see why it collapsed—the experiments were readily repeatable, and there was a large, diverse, and active scientific community ready to put their oars in. In the end, only a small fraction of physicists studying in the area of radiation were taken in, and only for a short time.

Water memories

One of the most prominent examples of confirmation bias involved another French researcher, named Jacques Benveniste. He spent a great deal of time and effort studying the effect of histamines. Naturally, a histamine causes an anti-histamine reaction in certain tests. However, what Benveniste reported in Nature was that the reaction got stronger as the histamine solution was diluted—even when it was highly improbable that there was any histamine left in the solution. Water, in effect, had a memory of the histamine.
His research was published in spite of the fact that the reviewers expressed disbelief in the results, because they couldn't see an obvious flaw in the methods. Normally, the results would have been left to stand until independent researchers had either corroborated the finding or found the methodological flaw. In this case, however, Nature felt that the results had to be corroborated as quickly as possible. To achieve this, they sent a group of observers to examine the experiment in more detail.

They found that the positive result was due to inadequate blinding. The anti-histamine reaction had to be assessed by examining a reaction—in other words, there was a strong element of human judgement involved. And the researchers performing the analysis knew which samples should give a positive result. When the experiment was performed with complete blinding, the positive result disappeared.

The consequence of this was that the researchers involved in the Benveniste's work effectively withdrew from the scientific community. To this day, they still perform follow-up research on that original null result, making increasingly fantastical claims about homeopathic remedies. They, along with other homeopathic researchers, form a community apart. The community, as far as I can tell, has very little internal debate over findings, being neither critical nor receiving criticism.

The key point in these two stories is that confirmation bias was found rather quickly, and those scientists who refused to acknowledge it were quickly isolated from their peers. When controversial results turn up in good science, the result is rather different.
User avatar
Asher
Family Elder
 
Posts: 338
Joined: Sun Jan 31, 2010 4:00 pm

Postby Lyon » Mon May 09, 2011 2:02 pm

Interesting reading, thanks Asher.
Lyon
Family Elder
 
Posts: 6061
Joined: Wed May 03, 2006 3:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service