New Data and Need for Action

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

Postby costumenastional » Thu Feb 18, 2010 2:04 am

Screening iron deposition is based on fairly new technology and i very much doubt they have come to solid conclusions regarding your question. Hope i am wrong.
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Advertisement

Postby thisisalex » Thu Feb 18, 2010 2:23 am

Clear thinking Mr Embry,

every number has been explanated by your new model, but not the number of healthy people In Italy. They didnt have CCSVI at all. 0% and we are talking about 235 healthy italians, which is bigger than the buffalon number of healthy people!
In Buffalo they looked for Zambonis 5 criterias. It would be interesting to know exactly what kind of criterias were true for healthy people. Lets imagine that only criteria number 2 and 3 was present in healthy people. in all of them. It means, that those criterias must be used with little importance in the future... Im sure Zamboni found a few other criteria for healthy people, but he didnt use them, because those people didnt have MS.

I am sure Zambonis 5 criteria must be redefined, beacuse they were defined for a very small group of MSers.

There must be an international criteria system defined which is only true for MS patients.

alex

PS: of course you are right with the other factors like vitamine D or smoking or EBV. But please dont forget, that these factors can worsen CCSVI (and not MS itself, or not the immune system itself). These factors could also be related to the veins only!

sorry for my english...
User avatar
thisisalex
Family Elder
 
Posts: 218
Joined: Wed Dec 02, 2009 4:00 pm
Location: Hungary

Postby sbr487 » Thu Feb 18, 2010 3:19 am

Another observation that needs to be made is that the system has conclusively failed to respond to this new discovery. All the hype about govt doing governance is really a myth and it is really the corporates that have taken over the system. Its pretty clear in case of ccsvi ...
I would not blame the pharmas for trying to push ccsvi to background (that is their agenda), it is the govt of the day that have been caught napping and even now they have not got up from their slumber ...
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 4:00 pm
Location: India

Postby shye » Thu Feb 18, 2010 8:12 am

One other thing this could suggest:
I suspect that a number of us have, instead of CCSVI, a structural deformatie causing the same problems of stopping or impeding venous flow from the brain. When i recently had my Chiropractor review the CCSVI material along with info on orthogonal treatment of the Atlas, and she then did manipulations to un-rotate the Atlas and C1, I have had immense relief from MS symptoms, including end of pain!! (And I think my neck problems affected arteries into as well as veins).
See thread http://www.thisisms.com/ftopict-9079-ja ... eformaties

When I can find an interventional radiologist who is familiar with Dr Zamboni's method (anyone know of one in NYC??? thanks) I will get the doppler done, and will then post results. I am hoping I am correct, and that mine is due to accidents messing the neck, and not to CCSVI.
If you read thru the site, quite a number of people had the MS show up after accidents affecting neck. These are the ones I suspect will be in another catagory than CCSVI, and one more easily corrected. And I think we are the ones with lesions in head, but not in spine.
Last edited by shye on Thu Feb 18, 2010 8:43 am, edited 1 time in total.
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 4:00 pm
Location: NYC

Postby TFau » Thu Feb 18, 2010 8:19 am

Do we know if the 10.2 % border-line cases were from the 280, 161, or 59 groups, or a mixture?
User avatar
TFau
Family Elder
 
Posts: 222
Joined: Tue Nov 24, 2009 4:00 pm

Postby Direct-MS » Thu Feb 18, 2010 9:58 am

I realize many on this forum want CCSVI to be the "be all and end all" in regards to MS. The Buffalo data clearly say it is not. However they do say it is a very important factor in the complex MS disease process in many cases (perhaps as high as 75%). The data also say it affects disease progression and should be "fixed" ASAP. I am sure some will enjoy substantial benefit from the relief of CCSVI while others will have a more muted response. Regardless, it is important that it be tested for and addressed if present. That is the important message.
User avatar
Direct-MS
Family Member
 
Posts: 72
Joined: Tue Nov 24, 2009 4:00 pm

Postby Cece » Thu Feb 18, 2010 10:05 am

I am still concerned about using the data point of 80% as the number of CIS cases that evolve into MS. The study I found on the matter (and posted here) divided CIS into two groups: CIS with no lesions found on MRI and CIS with at least one lesion or abnormality found on MRI.

The first group had only a 20% chance of developing MS over the next 14 years; the second group had a 90% chance. If the Buffalo study included only CIS patients from the latter group then 90% or conservatively 80% would be a good figure.

My assumption is that the Buffalo study included people with a diagnosis of CIS regardless of whether an abnormality had been found on their MRI and so the figure for the Buffalo CIS group, for chances of evolving to MS, is somewhere between 20% and 90%, dependent on how many people fall into each of those two categories.
"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
Cece
Family Elder
 
Posts: 9024
Joined: Mon Jan 04, 2010 4:00 pm

Postby sbr487 » Thu Feb 18, 2010 10:08 am

shye wrote:One other thing this could suggest:
I suspect that a number of us have, instead of CCSVI, a structural deformatie causing the same problems of stopping or impeding venous flow from the brain. When i recently had my Chiropractor review the CCSVI material along with info on orthogonal treatment of the Atlas, and she then did manipulations to un-rotate the Atlas and C1, I have had immense relief from MS symptoms, including end of pain!! (And I think my neck problems affected arteries into as well as veins).
See thread http://www.thisisms.com/ftopict-9079-ja ... eformaties

When I can find an interventional radiologist who is familiar with Dr Zamboni's method (anyone know of one in NYC??? thanks) I will get the doppler done, and will then post results. I am hoping I am correct, and that mine is due to accidents messing the neck, and not to CCSVI.
If you read thru the site, quite a number of people had the MS show up after accidents affecting neck. These are the ones I suspect will be in another catagory than CCSVI, and one more easily corrected. And I think we are the ones with lesions in head, but not in spine.


Very true. During my study of materials available on internet, I came across a Dr who was claiming that MS is mainly due to deformed spine close to head. I brought this up in a forum. Lot of people thought he is a quack. I would not accept or dismiss anyone just because he appears in a certain way or lacks the polish of "Drs".
If someone is interested, let me know about this site, I can look up in the other forum
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 4:00 pm
Location: India

Postby shye » Thu Feb 18, 2010 2:14 pm

thanks sbr 487
I would very much appreciate the info on the Dr you mention--when CCSVI became such big news at end of 2009, my suggestion of the rotated Atlas and C1 was put down by a number of people who felt the only answer was CCSVI. Now that more studies on CCSVI are giving it its place not as the sole cause, i think people are more open again to hearing of different angles to approach MS, and i would like to expand my knowledge in order to present these angles better .
Many thanks.
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 4:00 pm
Location: NYC

Postby MrSuccess » Thu Feb 18, 2010 10:48 pm

Numbers , numbers , numbers . So many combinations that poor old Mr. Success is puzzled. :wink:

Let me say emphatically ..I do not wish this on anyone but it has to be said. It is entirely possible that the healthy controls in the Buffalo study - those with stenosis but not MS - could go on to have CCSVI in the future. The scientists will be following this sub -group with a keen interest. I say get this group angio immediatley .

Why take a chance ?

Nice job reporting the CCSVI Big Idea Ashton . Well done. :!: :!: :!:


Mr. Success
User avatar
MrSuccess
Family Elder
 
Posts: 890
Joined: Fri Sep 18, 2009 3:00 pm

Postby Cece » Thu Feb 18, 2010 10:55 pm

shye wrote:when CCSVI became such big news at end of 2009, my suggestion of the rotated Atlas and C1 was put down by a number of people who felt the only answer was CCSVI.


I might be wrong but isn't a bone obstruction of a jugular (such as by the Atlas) one possible presentation of CCSVI? In Dr. Dake's presentation at the hamilton conference, he listed congenital CCSVI along with bone obstruction, arachnoid granulation, and a few others as possible etiologies for the CCSVI-related reflux.
"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
Cece
Family Elder
 
Posts: 9024
Joined: Mon Jan 04, 2010 4:00 pm

Postby sbr487 » Thu Feb 18, 2010 11:49 pm

shye wrote:thanks sbr 487
I would very much appreciate the info on the Dr you mention--when CCSVI became such big news at end of 2009, my suggestion of the rotated Atlas and C1 was put down by a number of people who felt the only answer was CCSVI. Now that more studies on CCSVI are giving it its place not as the sole cause, i think people are more open again to hearing of different angles to approach MS, and i would like to expand my knowledge in order to present these angles better .
Many thanks.


Shye,

Found the link.

I am not recommending anything here and people should go by their own judgement.

http://www.ms-cure.com/index.html
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 4:00 pm
Location: India

Postby shye » Fri Feb 19, 2010 8:54 am

Thanks sbr487
greatly appreciate it..
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 4:00 pm
Location: NYC

Postby shye » Fri Feb 19, 2010 9:25 am

Cece-
Yes, that's what I saw also, but very few people saw anything but the congenital--and now the Phlebotomy Society has ruled that the venous constritions are congenital!
There might very well be this congenital abnormality, but Dake at least is seeing that other things (such as bone obstructions) will give you the same end result--And Zamboni's original statements said veins were malformed or blocked. My point is just that the congenital is gaining the full attention here, and other aspects need to be advanced also. As more and more studies are done, this will become more apparent.
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 4:00 pm
Location: NYC

Nice article, but...

Postby ScutFarkus » Sat Feb 27, 2010 3:52 pm

This post has been bothering me for a while. Overall, I liked Dr. Embry's article, though I do think the tone is overly defensive. More significantly, I have a problem with two false dichotomies presented in the article.

The first is with the discussion of the cause-and-effect relationship between MS and CCSVI. The article states:
the origin of CCSVI is congenital (in utero) and is not the product of post-birth
environmental insults or the MS disease process. This means, if CCSVI can be shown to
be closely associated with the MS disease process, then it is almost certainly a causal
factor of MS. The alternative interpretation would demand an incredible chance
coincidence of CCSVI and MS and it cannot be considered plausible.

The notion that there is only a single "alternative" to the MS-causes-CCSVI hypothesis is the false dichotomy. When two events are correlated, like MS and CCSVI appear to be, there are at least three possible explanations: MS causes CCSVI, CCSVI causes MS, or a third unknown factor causes both. I agree that the apparently congenital nature of CCSVI is a pretty strong indication that it's not caused by MS. But I don't agree that this "means" CCSVI must therefore cause MS. That's just one of (at least) two possible explanations. Also, I look forward to reading the paper that declares CCSVI to be congenital, because one obvious question is how they ruled out the possibility that CCSVI might sometimes develop after birth: it seems plausible that a condition present at birth in 99% of those who have it could be deemed congenital, despite some (rare) conditions causing it to develop later in life. It's very hard to prove a negative, e.g. to prove that CCSVI never presents after birth.

The second false dichotomy is captured in these statements from the recommendations section:
...it is essential that every person with MS be properly tested for CCSVI as soon possible. ...it is most important to get the impaired venous blood flow corrected. Given the high likelihood that
CCSVI accelerates the disease process, persons with MS and CCSVI do not
have the luxury to wait 5-10 years before the MS researchers prove the
obvious through a major clinical trial.


The implication here is that patients with MS have two choices: proceed immediately for testing and treatment, or wait 5-10 years for researchers to "prove the obvious." But clearly a third choice is to wait some amount of time between 0 and 5 years, and then decide about testing and treatment. The obvious near-term event that is probably worth waiting for is the full release of the Buffalo study phase I results in April. That will presumably provide even more details (such as the raw numbers from which the hotly-debated percentages are drawn), plus it will be the time when the all-important peer-review process really gets underway. I'm sure there will also be continuing updates from Zamboni and others between now and the distant 5-year point, status updates from those who have already been treated, announcements of new research, refinements to the testing and treatment procedures, plus much more.

In my opinion, one of the big risks of getting tested too soon is that there's still so much uncertainty about exactly how to conduct the tests. Different testing centers seem to be reporting very different CCSVI incidence rates. Long before clinical trials of treatments show any results, there should be significant improvements in testing know-how and consistency. Indeed, I'd expect the testing situation to be improving on a monthly basis right now.

/Scut
User avatar
ScutFarkus
Family Member
 
Posts: 70
Joined: Wed Sep 23, 2009 3:00 pm
Location: Silicon Valley, CA, USA

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: Robnl


Contact us | Terms of Service

cron