Fondazione Hilarescere letter to Alberta Health Services

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

Fondazione Hilarescere letter to Alberta Health Services

Postby PCakes » Fri Aug 06, 2010 9:00 pm

Many many questions in here... http://www.albertahealthservices.ca/fea ... -sheet.pdf

I'll start...
For example, we know that levels of a protein called TNF-alpha are elevated in active MS and that drugs that block TNF-alpha are helpful in rheumatoid arthritis. However, drugs to block TNF-alpha actually made MS worse in clinical trials.


Are there any vaso-constricting characteristics of this drug? and how long did it take to get this trial up and running?

Are CCSVI and MS related?
Many people hope that CCSVI will prove to be the cause of MS but, at present, this idea is
not supported by fact. Furthermore, it does not seem likely that MS causes CCSVI.

further down..
If proven, the association between MS and CCSVI may actually be explained by MS causing CCSVI. The Inflammatory proteins related to MS travel through the major veins draining the brain, and may cause the veins to simply show changes consistent with inflammatory cell contact. In the Buffalo study, a higher frequency of CCSVI was seen in MS patients with more severe disease; this is most consistent with MS causing CCSVI.


?? contradictory and confusing??
Last edited by PCakes on Mon Oct 18, 2010 7:32 am, edited 1 time in total.
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Postby garyak » Sat Aug 07, 2010 12:12 am

This is a fairly interesting read on this from the Vancouver Sun.

http://www.vancouversun.com/health/Albe ... story.html

The article emphasizes "dangerous" risks with procedures and talks about AHS discouraging all ms sufferers from going out of the country to have it done. I had lunch with Neil Pierce mentioned in this article about 6 weeks ago. They want me to be part of their advisory committee ...hmmmm . I found out preliminary results yesterday from the Hubbard foundation. I will get the final results from Dr.Haake soon. The results showed significant reflux in both jugulars-enough to initiate a referral to an I.R. This could be a valuable experience for me if I ever do get involved with our local MS society.
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Postby Billmeik » Sat Aug 07, 2010 4:41 am

Many people hope that CCSVI will prove to be the cause of MS but, at present, this idea is
not supported by fact. Furthermore, it does not seem likely that MS causes CCSVI.



what's refreshing about this is later he contradicts himself and says ms causes ccsvi. That is something science can test. No on has dared to say it but it's been there since buffalo.

that's why it's big to find patients like the kid at georgetown with bad ccsvi and just mild ms. This would be proof of it going the other way.

Of course putnam needs replication. Even if the animals don't get lesions when their veins are clamped that's the study we need.
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Postby Billmeik » Sat Aug 07, 2010 7:03 am

CCSVI and MS may be related. Current information from Buffalo suggests that people with MS have a 56.4% chance of having CCSVI, and that those without MS have a 22.4% chance. In addition, over 40% of people with other neurological diseases have vascular changes consistent with CCSVI.



Of course that 56 goes up to 62 when you eliminate borderlines.By quoting the lower number you are showing your opinions in this discussion.

The Buffalo study is in quesion because of their extensive use of ultrasound and mri. Venography is the gold standard.




However, other groups (Doepp et al, 2010 Annals of Neurology) have not found an increased rate of CCSVI in British and German people with MS as compared to “control” persons without MS




If we're going to talk about the replications, the score is zamboni 100, Simka, 95, Jordan 88, Kuwait 82,Kosteki 84, India?,Costa Rica?,Scotland? Buffalo 62, Germany 0, Sweden 0.


Good thing this is the world cup or we wouldn't be winning.





In contrast, Dr. Zamboni reported that 100% of the MS patients he studied had MS but none of his controls had CCSVI. While the final answer is not clear, anyone following CCSVI through the social media knows that many people with MS do not have the imaging changes that define the syndrome.



I think zamboni is now finding around 12%? Other sites are reporting 14%

As we go my key arguement is "CCSVI is truncular. 40 vascular experts agreed. Lots of patients have bone involvement. I really like your paper because it clearly states the other logic. Breaking down that logic using science is all Im trying to do.
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Postby Billmeik » Sat Aug 07, 2010 7:15 am

If proven, the association between MS and CCSVI may actually be explained by MS causing CCSVI. The Inflammatory proteins related to MS travel through the major veins draining the brain, and may cause the veins to simply show changes consistent with inflammatory cell contact. In the Buffalo study, a higher frequency of CCSVI was seen in MS patients with more severe disease; this is most consistent with MS causing CCSVI.




So I guess you didn't mean it when you said

Furthermore, it does not seem likely that MS causes CCSVI.



This mistake is a good sign. It shows you just sat down at a typewriter and wrote off the cuff. We need that from 'the other side'. Thank you.

For me causation comes down to putnam, and whether his work from 1936 will be replicated at stanford. If occlusions in jugular veins cause enephalomyelitus then we know the venous theory of ms is true. If not, we lose.
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Postby Billmeik » Sat Aug 07, 2010 7:27 am

Restenosis is the other strong evidence of ccsvi->ms .

Patients experience ms symptoms when their veins close up. All over the world in dozens of cases. I know ignoring this is the official way but if you think of all these people as lab rats, restenosis can prove causation.
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Postby PCakes » Sat Aug 07, 2010 7:30 am

good morning..

Such a poorly written paper.. am i biased, yes, but setting that aside the contradictions (highlighted by myself and billmeik) along with the scare tactics makes this painful to read.
I find this to be a blatant misuse of power and trust. There are still many msers counting on the MS society and Health Canada for information.
I wonder if the author(s) will come forward?
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Postby PCakes » Sat Aug 07, 2010 7:38 am

Congrats on your results Gary!
Yes, please, join that advisory board! ..their need for your help is apparent.
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Postby Cece » Sat Aug 07, 2010 8:52 am

PCakes wrote:Such a poorly written paper.. am i biased, yes, but setting that aside the contradictions (highlighted by myself and billmeik) along with the scare tactics makes this painful to read.

Yes, painful!! That was my reaction too.
"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 Billmeik » Sat Aug 07, 2010 12:05 pm

How could MS actually cause CCSVI?
We know from many studies that signals within the brain attract inflammatory cells from the circulation. This causes these inflammatory cells to stick to the small blood vessels in the brain.
These cells do not get stuck in the vessels due to blocked flow; instead, they become attached to the vessels because molecules called “integrins” on the inflammatory cells exactly match molecules on the vessel wall (“integrin receptors”) like a key in a lock. Once bound to the vessel the inflammatory cells can then pass into the brain.



It is good to hear this put into words. Lots of docs have been saying it but is there a chance that ccsvi is a build up of scar tissue? Is stenosis somehow caused by brain lesions?


Yes. I want to know. On with the tests and the probing of ccsvi causation.


btw assuming the former was the case, is there still an arguement towards
clearing the blockages for therapeutic reasons? Perhaps...

This is where I go onto a system's comparison of my pick up truck and how it stopped running because of a clog in the catalytic. The tail pipe got blocked and so the engine stopped. The output had ccsvi and that caused the central processor to fail.


geek talk. Dunno if it's true.
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Postby 1eye » Sat Aug 07, 2010 2:32 pm

I think maybe causes of CCSVI are within modern research's grasp. It will not be necessary for anyone to rub salt in the wound, and say why congenital venous abnormalities can't be caused by MS. But applying a fraction of the research and sacrifice of animals should give us an idea where it comes from. It could be fetal alcohol, or fetal smoking...maybe lead or strontium 90? I figure genes are a good start.
"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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Postby garyak » Sat Aug 07, 2010 3:19 pm

Wow are we getting to see frequent examples of the media just "going off" on this ccsvi being total placebo. This one from the Edmonton Journal ;

http://www.edmontonjournal.com/opinion/ ... story.html

The author claims that not one neurologist in Canada has measured any improvements in patients post liberation - really???
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Postby PCakes » Sat Aug 07, 2010 3:43 pm

..my last visit to the MS Clinic had me 'out on my ear' for uttering the evil acronym.
Little chance of documenting improvements if healthy dialogue is rejected.

It is all so puzzling... :(

However, my faith and conviction remain solid.
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Postby PCakes » Sat Aug 07, 2010 3:53 pm

Zamboni clains MS is caused by a buildup of iron deposits in the veins leading to the brain. He further claims that unblocking the veins, using balloon angioplasty and stents, improved cranial blood flow and improved range of movement in MS patients.


oh my...sigh..
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Postby tazbo » Sat Aug 07, 2010 6:24 pm

Avis Favarro had the facts alot more accurate back with the original news story. Who is adding such garbage info into the mix, why is there coverage of bad study results...where is the open and honest look at this? Why would the MSS write the gov to tell them to ignore CCSVI unless they say to look at it...why did Yves say he doesn't know about a world recognized phlebology organization...and that he could support a pharmacological treatment for CCSVI...???
Sure is hard to feel things are being presented without a bias.
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