Buffalo Study Healthy Controls

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

Re: Controls in MS Trials

Postby malden » Thu Sep 23, 2010 11:47 am

MarkW wrote:Choosing people without MS as the healthy controls for MS trials is not logical. Think about the basics of MS - it has an underlying genetic predesposition which is yet to be fully understood and documented. As a minimum healthy controls should be genetically tested to exclude subjects with genes, which may lead to development of MS. More cost I know, when we are still asking do pwMS have restricted veins.
MS is a truly complex disease.....................
Kind regards,
MarkW


1st... Healty controls are always random people without subject diagnosys,
2nd... MS is not genetic.
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Re: Controls in MS Trials

Postby scorpion » Thu Sep 23, 2010 11:57 am

sbr487 wrote:
cheerleader wrote:Actually, that's not true. According to a new study, the copy number variations located in the HLA locus chromosome 6p21.32 --the locus which is already studied and found related to MS--also contain CNVs for venous malformations found in CCSVI.


Cheer, the context in which the comment was made, I felt Mark did not mean to rely on this study you have pointed out. Do you really think one can rely on such preliminary study to decide on another which is itself so preliminary?


Oh yes i think we can!!!!
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Re: Controls in MS Trials

Postby malden » Thu Sep 23, 2010 11:57 am

cheerleader wrote:...Whether or not "normals" have CCSVI is not the issue....


Yes it is... or you contradict to dr. Sclafani, dr. Zamboni and others who claim that CCSVI is problem that have direct repercussion on some symptoms as fatique, etc....
Last edited by malden on Thu Sep 23, 2010 11:59 am, edited 1 time in total.
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Re: Controls in MS Trials

Postby scorpion » Thu Sep 23, 2010 11:58 am

Malden wrote:
MarkW wrote:Choosing people without MS as the healthy controls for MS trials is not logical. Think about the basics of MS - it has an underlying genetic predesposition which is yet to be fully understood and documented. As a minimum healthy controls should be genetically tested to exclude subjects with genes, which may lead to development of MS. More cost I know, when we are still asking do pwMS have restricted veins.
MS is a truly complex disease.....................
Kind regards,
MarkW


1st... Healty controls are always random people without subject diagnosys,
2nd... MS is not genetic.


But there seems to be a gentic componenet to MS certainly?
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Re: Controls in MS Trials

Postby concerned » Thu Sep 23, 2010 12:01 pm

scorpion wrote:
Malden wrote:
MarkW wrote:Choosing people without MS as the healthy controls for MS trials is not logical. Think about the basics of MS - it has an underlying genetic predesposition which is yet to be fully understood and documented. As a minimum healthy controls should be genetically tested to exclude subjects with genes, which may lead to development of MS. More cost I know, when we are still asking do pwMS have restricted veins.
MS is a truly complex disease.....................
Kind regards,
MarkW


1st... Healty controls are always random people without subject diagnosys,
2nd... MS is not genetic.


But there seems to be a gentic componenet to MS certainly?


Was going to mention that.
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Re: Controls in MS Trials

Postby malden » Thu Sep 23, 2010 12:05 pm

scorpion wrote:But there seems to be a gentic componenet to MS certainly?


Really? :(
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Re: Controls in MS Trials

Postby cheerleader » Thu Sep 23, 2010 12:11 pm

sbr487 wrote:
cheerleader wrote:Actually, that's not true. According to a new study, the copy number variations located in the HLA locus chromosome 6p21.32 --the locus which is already studied and found related to MS--also contain CNVs for venous malformations found in CCSVI.


Cheer, the context in which the comment was made, I felt Mark did not mean to rely on this study you have pointed out. Do you really think one can rely on such preliminary study to decide on another which is itself so preliminary?


I'm sorry, sbr, but what else should we rely on? Yes, I do think we need to consider genetic studies. Geneticists and scientists would agree. I heard Dr. Ferlini speak in Bologna last year---there is a very strong, undeniable correlation of CCSVI and venous malformations on the HLA locus 6p21.32 She was surprised to note this, but the multiple shared CNVs were with MS.
Here's another study on this specific chromosome and the relationship to MS.

Multiple sclerosis (MS) is a complex autoimmune disease of the central nervous system with a prominent genetic component. The primary genetic risk factor is the human leukocyte antigen (HLA)-DRB1*1501 allele; however, much of the remaining genetic contribution to MS has not been elucidated. The authors investigated the relation between variation in DNA repair pathway genes and risk of MS. Single-locus association testing, epistatic tests of interactions, logistic regression modeling, and nonparametric Random Forests analyses were performed by using genotypes from 1,343 MS cases and 1,379 healthy controls of European ancestry. A total of 485 single nucleotide polymorphisms within 72 genes related to DNA repair pathways were investigated, including base excision repair, nucleotide excision repair, and double-strand breaks repair. A single nucleotide polymorphism variant within the general transcription factor IIH, polypeptide 4 gene, GTF2H4, on chromosome 6p21.33 was significantly associated with MS (odds ratio = 0.7, P = 3.5 × 10−5) after accounting for multiple testing and was not due to linkage disequilibrium with HLA-DRB1*1501.

link

And I'll try this again. I agree with Mark. There is a GENETIC PREDISPOSITION to MS. This does not mean everyone with this genetic predisposition will develop MS. Not everyone with a genetic predisposition to heart disease needs quadruple bipass surgery. Only the unlucky ones. Many of us get by with genetic predispositions to cancer or obesity or lung disease and we never get seriously ill. But eventually, we will all die.

There are environmental issues that need to be clarified in MS. Whether it be EBV, or a high fat diet, or no sunshine, or strep throat or just crappy luck...there is more to the picture than genetic predisposition. But this should not preclude people from being treated for venous malformations if they have full blown MS. period.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Controls in MS Trials

Postby malden » Thu Sep 23, 2010 12:21 pm

cheerleader wrote:And I'll try this again. I agree with Mark. There is a GENETIC PREDISPOSITION to MS. This does not mean everyone with this genetic predisposition will develop MS. Not everyone with a genetic predisposition to heart disease needs quadruple bipass surgery. Only the unlucky ones. Many of us get by with genetic predispositions to cancer or obesity or lung disease and we never get seriously ill. But eventually, we will all die.

There are environmental issues that need to be clarified in MS. Whether it be EBV, or a high fat diet, or no sunshine, or strep throat or just crappy luck...there is more to the picture than genetic predisposition. But this should not preclude people from being treated for venous malformations if they have full blown MS. period.
cheer


I don't know for what illness I am genetical predisposed. Is some test available? Just in case, it's good to know. You can skip expensive exames.
malden
 

Re: Controls in MS Trials

Postby scorpion » Thu Sep 23, 2010 12:24 pm

cheerleader wrote:
sbr487 wrote:


I agree with Mark W 100%---Whether or not "normals" have CCSVI is not the issue.
cheer



what? 8O 8O 8O 8O I now officially propose CCSVI trials should come to an end. So basically what you are telling me is that finding CCSVI in itself is subjective(according to people Zamboni has trained) and now if you have it or not is not the issue? 8O I give up. All of CCSVI's bases are now covered. Let me see if I have this straight. If through diagnsotic tests CCSVI can not be found it is because the person looking for it A. does not have the right equipment or B. can not find it due to the subjective nature of CCSVI itself. Once, through subjective observation, CCSVI is "found" it can be addressed by opening up the blocked veins. After the operation, if you see no improvements, it is because the veins have restenosed so you need to go back to the doctor who found it via subjective observation so that he can see the blockage that have occured..again. Ok but what if during a blinded study as many people without MS are found to have CCSVI as those with MS? Well it does not matter because it has now BEEN PROVEN that those people with CCSVI that are not diagnosed with MS are simply the lucky ones. Since the placebo effect does not apply to the liberation procedure why are we wasting money on clinical trials? What is left to prove??? I promise, so as not to get this post off topic, I will not comment further!
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Postby malden » Thu Sep 23, 2010 12:32 pm

Thank you scorpion for extending my post :) Me and my english are unable to.
Last edited by malden on Thu Sep 23, 2010 12:35 pm, edited 2 times in total.
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Re: Controls in MS Trials

Postby scorpion » Thu Sep 23, 2010 12:32 pm

Malden wrote:
scorpion wrote:But there seems to be a gentic componenet to MS certainly?


Really? :(


Nevermind. I am just one of the hapless few who believe that MS is a complicated disease that scientists have not yet completly figured out. :oops: What I have learned is that people on MS blogs know way more about the science thenany layman scientist or researcher that has spent 10 -12 years in college earning their PHD. Geeze sorry Jimmylegs, mouth closed on this topic!!!!
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Re: Controls in MS Trials

Postby Lyon » Thu Sep 23, 2010 12:33 pm

scorpion wrote: what? 8O 8O 8O 8O
It'll make some happy that I'm going to have to stay out of this one because I'm afraid of getting electrocuted by the tears of laughter hitting my keyboard!

Considering some of the posts I've read in this thread, you've summed things up about as well as possible scorpion!
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Postby cheerleader » Thu Sep 23, 2010 12:36 pm

Scorp--the venous malformations are detected by ultrasound and venography. They exist. There are inverted valves, cysts, damaged and impinged veins. This is not up for debate. The doctors have seen it. I spent the day with Dr. Haacke, and he can attest to the weird venous problems he's seeing in pwMS. It's not normal. It's not subjective.

If you were found to have an occluded carotid artery, you would be treated. If you were found to have an occluded hepatic vein, you would be treated. How are most of these venous or arterial disease detected? AFTER damage has been done to the organ they feed or drain. Docs don't go looking for venous or arterial disease on a whim. There are indictions. Same with CCSVI/MS.

If I have carotid arterial disease, but am asymptomatic, I go on with my life. Maybe I'll have a stroke at 86, and everyone will say- She lived a long life...
If my son inherits his Dad's malformed jugular veins, but for whatever reason, never develops MS--it isn't an issue. If a healthy person has a venous malformation, but the body is able to work around it and MS never develops, it's a moot point.
does that make sense?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Controls in MS Trials

Postby malden » Thu Sep 23, 2010 12:40 pm

scorpion wrote:...What I have learned is that people on MS blogs know way more about the science thenany layman scientist or researcher that has spent 10 -12 years in college earning their PHD...


But they have a live to live... What the f. is MS for them?
malden
 

Postby malden » Thu Sep 23, 2010 12:49 pm

cheerleader wrote:Scorp--the venous malformations are detected by ultrasound and venography. They exist. There are inverted valves, cysts, damaged and impinged veins. This is not up for debate. The doctors have seen it. I spent the day with Dr. Haacke, and he can attest to the weird venous problems he's seeing in pwMS. It's not normal. It's not subjective...


According to Buffalo study, 1/4 adult people on the Earth have those "malformations". This is not up for debate. The doctors have seen it.
Are they sick? Do they need treatment? If not why? CCSVI is not myth, its real threat to human body.
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