MS Society eNews and CCSVI

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

MS Society eNews and CCSVI

Postby Axiom » Thu Nov 12, 2009 8:48 am

I just got the November eNews from the National Multiple Sclerosis Society and CCSVI has top billing. Of course they add a disclaimer that results are unconfirmed, many questions remain, etc. But I'd say they're definitely paying attention.
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Postby 10yearsandstillkicken » Thu Nov 12, 2009 9:29 am

this http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2206 is the link to the article. Have any researchers applied or asked NMSS for funding? I have read in several posts that funding has been an issue.
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Postby magoo » Thu Nov 12, 2009 11:54 am

I got it too! I used to be an MS Ambassador for the Mid-Atlantic Chapter and sent them an email about my CCSVI story. I'm hoping they will be interested.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Sharon » Thu Nov 12, 2009 12:13 pm

Here is another article- no reason to start a new thread. Even though these articles are skeptical of CCSVI, they are at least offering some press space.
From: The Barts and the London school of Medicine http://tinyurl.com/ybmr9sz

Recently, evidence has emerged – and widely publicised – that a condition called “chronic cerebro-spinal venous insufficiency (CCSVI)” may play a role in the pathogenesis of multiple sclerosis (MS). Paolo Zamboni, professor and director of the Vascular Diseases Centre at the University of Ferrara (Italy), and co-workers detected anomalies of venous drainage from the brain and spinal cord in all 65 (100%) people with MS in their cohort (published earlier this year in the Journal of Neurology, Neurosurgery and Psychiatry). Using venous ultrasound as well as venography (where a dye or contrast agent is injected through a catheter) they reported four patterns of restricted blood flow due to narrowing in the internal jugular, azygos and superior cava vein system. In none (0%) of their 235 strong control population (i.e. people with no known disease of the nervous system and people with neurological conditions other than MS such as Parkinson’s or motor neuron disease) did they find abnormalities similar to that found in the group of 65 people with MS.
Based on these findings, Professor Zamboni and his colleagues have started treating people with MS using a technique called endovascular balloon angioplasty, which widens the blood vessels using a catheter that has a balloon attached to its tip; when the balloon is inflated the vessel is opened. In a few cases they have resorted to inserting a stent, or rigid tube, in places where narrowing had been detected. Preliminary results following treatment of 75 patients with MS were reported earlier this year at the 31st Charing Cross Symposium “Vascular and Endovascular Controversies Update”. At that point patients had been followed up for a maximum of one year. Zamboni’s team reported positive trends using a panel of outcome measures of efficacy; i.e. (i) the MS functional composite (MSFC) scale, which measures walking speed, upper limb function and cognition, (ii) quality of life (MSQoL-54) and (iii) relapse rate.

The recent collaboration of Professor Zamboni’s group with MS experts from Buffalo (NY) and Detroit (MI) has propelled “CCSVI and MS” to a new level of publicity. This group plans to investigate 1,600 adults and 100 children with a diagnosis of possible or definite MS alongside 300 healthy controls and 300 patients with autoimmune and/or neurodegenerative diseases other than MS. Apart from using doppler ultrasound of head and neck blood vessels this group will also use magnetic resonance imaging (MRI) of the brain with particular focus on brain iron levels; the effects of excess iron has been implicated for some time in the tissue destruction that occurs in various brain disorders including MS.

The “big idea” underlying the presumed link between CCSVI and MS is that narrowing in large veins outside the central nervous system (CNS) leads to stagnation of venous blood in small veins within the CNS and, subsequently, to iron deposition and inflammation around these veins with damaging knock-on effects (e.g. demyelination & axonal loss). Zamboni likens the perivascular MS lesion to a venous ulcer of the leg emerging from a varicose vein. The origin of increased iron in varicose legs is the leaking of red blood cells in conditions with stasis of blood in the veins.

Extravasation of red blood cells and thrombosis of small veins have indeed been seen in MS brain tissue, too. However, such findings are rare and far outnumberd by evidence suggesting different early abnormal events in MS lesion development including (i) migration through the blood brain barrier of autoreactive T cells or (ii) oligodendrocyte death.

There are numerous further questions that need to be addressed in order to draw any reasonable conclusion from Zamboni and co-workers’ findings: How does CCSVI explain relapses and remissions? What is the mechanism underlying apparent narrowing in large veins of people with MS? Are these vascular changes primary or secondary to MS? What is the association between these changes and apparent iron deposition in the brain of patients with MS? Is there an animal model that responds with inflammation and demyelinaton following stasis in large skull veins? Is there any evidence from people with MS who have been – for reasons other than MS – on drugs to thin the blood? And so forth…

We will follow the Ferrara/Buffalo/Detroit-collaboration on CCSVI in MS with interest, and we understand a first preliminary analysis is due within the next few months. For the time being, patients and their families should be re-assured that there is currently very little – if any – evidence in favour of endovascular treatment for MS. These procedures are invasive and carry a risk. Without firm evidence from properly conducted clinical trials we would not recommend this therapy.

Klaus Schmierer & Gavin Giovannoni

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Postby MrSuccess » Thu Nov 12, 2009 1:19 pm

It looks like Klaus and Gavin need to do a bit more homework :twisted:

I beg to differ on their last paragraph statement .

November 24th ? :wink: I have it circled.





Mr. Success ......smiling like a butchers dog ......
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Postby ikulo » Thu Nov 12, 2009 2:29 pm

haha, I love the fact that they include a list of critical questions before they will even think about supporting it, yet no doubt they prescribe Copaxone without knowing exactly how IT works. that's just plain silly.
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Postby cah » Thu Nov 12, 2009 2:36 pm

Very telling... "Schmierer" is german for "messy writer", "Giovannoni" is italian for "Son of John" (sort of). :lol:
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Postby Ruthless67 » Thu Nov 12, 2009 2:59 pm

Your right Sharon, at least we're getting some press space. I've heard it said more than once, even bad press is good press, lol.
My hackles went up immediately while reading just the second sentence. I'll copy the sentence without the parenthesis. “Paolo Zamboni, professor and director of the Vascular Diseases Centre at the University of Ferrara , and co-workers detected anomalies of venous drainage from the brain and spinal cord in all 65 people with MS in their cohort.”
It was the use of the word, cohort that I took exception to, I thought it had a negative connotation until I looked it up in the Thesaurus where it said:
Cohort: partner in activity
Synonyms: accomplice, adherent, aide, ally, assistant, associate, companion, company, comrade, confrere, consociate, contingent, disciple, follower, friend, hand, legion, mate, myrmidon, pal, partisan, regiment, satellite, sidekick, stall, supporter .
So I had a good laugh at myself. :lol:
But their last sentence is negative, in that it implies that Paolo Zamboni and his cohorts :wink: , did not conduct a proper clinical trial.
"Without firm evidence from [i]properly conducted clinical trials we would not recommend this therapy."[/i]
Lora
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Postby ozarkcanoer » Thu Nov 12, 2009 3:03 pm

I think the article from The Barts and The London School of Medicine sounds a bit paternalistic :

"For the time being, patients and their families should be re-assured that there is currently very little – if any – evidence in favour of endovascular treatment for MS."

I fell SOOOO re-assured, LOL. :roll: :roll:
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Postby Ruthless67 » Thu Nov 12, 2009 3:06 pm

Me too, I'm so re-assured, lol
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Postby cah » Thu Nov 12, 2009 3:31 pm

Ruthless67 wrote:But their last sentence is negative, in that it implies that Paolo Zamboni and his cohorts :wink: , did not conduct a proper clinical trial.
"Without firm evidence from properly conducted clinical trials we would not recommend this therapy."
Lora


The comment-called farce from the swiss MS society even says: "Unfortunately, a study of those interventions presented by Paolo Zamboni (Bologna) does not meet the required methodological standards."

I really wonder how they explain that. :evil:
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Postby Arcee » Thu Nov 12, 2009 3:38 pm

I write this with a stent in my neck so you know that I am a big supporter, nonetheless, it is true that so far there have not been proper clinical trials that meet existing methodological standards.
Many of us already find Zamboni's data and arguments compelling, but it also is true that at some point classic clinical trials will have to take place to persuade the broader medical community. Most likely, they already are being planned.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby cah » Thu Nov 12, 2009 3:45 pm

Arcee, could you explain what "proper" and "classic" is in this case? I really don't know or can imagine, as placebo-stents are impossible as well as double-blinded studies against CRABs...
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Postby Arcee » Thu Nov 12, 2009 4:13 pm

Well, I can try...From talking with my neuro and others, it sounds like clinical trials exist that also include sham surgeries. That sounds kind of barbaric in a way, but I guess it does happen. Also, you could imagine lots of other ways there could be a control group since they do it all the time with the injectables - - maybe everyone gets stents and some inject real stuff and others a placebo, maybe the control group is monitored in another study, etc. But tight controls on recruiting participants and monitoring outcomes with some sort of control group, ideally placebo controlled, is warranted. The researchers involved with CCSVI know the generally accepted standards, and are diligently building their case, JNI in particular.
The thing is, building that kind of case while admirable and no doubt ultimately effective with the broad medical community, takes a ton of time and money. And many of us, myself included, didn't/don't want to wait. And great researchers like Dr. Haacke and doctors like Dr. Dake have stepped up and gotten things moving to further lay the groundwork with solid arguments enroute to larger clinical trials.
Although I am a professional researcher, and have discussed this issue with many other professionals, clinical trial design is not my expertise so this answer may be incomplete but I hope it helps.
EDIT: I am far more familiar with Drs. Haacke and Dake, but would imagine Dr. Simka belongs in that class as well. Also, perhpas it doesn't need to be said, but the outocme data from a clinical trial also has to be published in a peer reviewed journal, and that hasn't happened yet. And, unfortunately, we do not know if and what is due out any time soon. (If anyone out there knows, please tell!) The MS Societies probably won't respond real positively until that happens.
diagnosed RR in spring '04
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Re: MS Society and eNews and CCSVI

Postby NHE » Thu Nov 12, 2009 5:06 pm

Arcee wrote:Also, perhpas it doesn't need to be said, but the outocme data from a clinical trial also has to be published in a peer reviewed journal, and that hasn't happened yet.


Zamboni's Dec 2008 study was published in the Journal of Neurology, Neurosurgery, and Psychiatry which is indeed peer reviewed. http://jnnp.bmj.com/

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